Accepting Your Child’s Hearing Loss

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When you first realize that your child is suffering from hearing loss, you will probably feel shocked and helpless. It may be difficult to accept what the doctors tell you. This is a perfectly normal reaction, and it takes time to become informed about hearing loss and accept your reality.

Every parent experiences a variety of emotions when coping and learning about their child’s hearing disability. A parent may feel isolated, especially when no other child with hearing loss lives nearby. A parent may deny that there is a hearing deficit. A parent may experience depression and shame. Frustration, anger and confusion are others feelings that parents experience, particularly when medical and educational support seem to be no where. I’ve met many parents who hide their feelings and have difficulty coping with the real issues at hand.

Grief is real. I am a parent who has also experienced grief. It is not something any of us should shoe away. We have to face it. Hearing loss in our children is not our fault, even though other family members and people may blame us. We are not alone in the feelings we experience, which is why we need each other for support.

It is important to realize feelings shift and change, as does our perception of hearing loss and even our child’s potential. These things are normal. Allowing these emotions are more accepted when parents work together and get information to better understand how to help their children. After some time, an understanding of hearing loss becomes more tangible, and parents learn to care for their littles ones with determination.  Everyone’s personal situation is different of course, but if others can be there for us, then why not listen and learn?

A task then becomes how to make the best of a situation, how to lean in and accept what God has given us: a child with blue or brown eyes, who laughs and cries, who grows into their own person. A child’s daily life and future depend on how parents envision their future. Ask yourself, what are your beliefs?  Values? Where do you want to see your child in 20 years?

All parents have an opportunity to learn and grow from this remarkable and gifted journey.

Support is available and parents should ask many questions about hearing loss. The best approach in my opinion is to be open-minded, to seek help from as many people as you can. Audiologists, doctors, other parents in the same situation are great resources. Family and friends who support you can also be pillars of strength until you get your footing on a path that feels right for you and your child. Learn the facts. Explore what resonates best with you and your child.

I’ve found that sharing my feelings and personal situations helps off load the tension and helps me develop an inner confidence to advocate for the needs of my children. In other words, talking about it prepares me to advocate for them. It is immensely critical to talk with other parents of children with hearing loss and learn about their experiences too. Family and friends may also provide emotional support. I’ve found strength in knowledge, maybe you can too.

Remember, you are not the first or only parent to have a child that is living with hearing loss. And just think this: children are often better able to cope than you might realize.

Information from this article should be cited/referenced as: “Joanne Travers, Partners for A Greater Voice, Inc. Content derived from Essential Programs to Coach and Empower (2016). Ipswich, Massachusetts U.S.A. www.greatervoice.com”

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Starting a Parent Group

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Getting A Parent Group Started:
by Joanne Travers, MIM

Starting a parent group takes time and energy. The primary actions to keep in mind are consistency and follow though. Before starting your parent group, find another dedicated parent or two to get started.  Sit down and talk it through. Agree to work together to carry out specific goals and objectives that you define. It’s a busy road when only one parent is spearheading a group, so try finding others to offset the burden. You’ll reap the benefits of friendships, support and knowledge. Here are some steps to consider:

  1. It’s not necessary to legally incorporate a parent group unless you wish to do major fundraising or start an organization that can be officially listed as am organization or agency in your state or country. You may wish to start the group in the first year, and then determine if legalizing your organization is necessary.
  2. To incorporate a parent organization, you must consult local authorities on legal paperwork and procedures.
  3. Gather a list of parent names, including address, telephone/cell numbers, child’s name and date of birth, plus relevant information such as degree of loss, cause of loss, school, and other useful data. Create a file, using index cards or folders. If computers are accessible, create a database that can be easily managed and updated. What’s App is a great tool to use as you broaden and build your network of parents.
  4. Include interested practitioners in your group! They are resourceful!
  5. Begin by meeting with a few people/parents committed to starting a parent group. At this meeting, discuss your objectives and goals. Discuss your purpose. Feel free to keep the meeting general, allowing time to flush out what’s most important to you and your community.
  6. Determine if you want the group to have membership fees or if it should be free. Consider asking parents to contribute if annual fees are unaffordable.
  7. Choose 2 – 3 tangible activities or events that you can easily coordinate amongst yourselves. Choose activities or events that you have contacts and resources for. For example, invite your doctor to talk about a subject matter, meet at your church or school auditorium, or pull information from a library or the internet to have a meaningful discussion around a specific topic.
  8. Find a convenient location in which to gather parents. Welcome their children, since children need each other in this journey too! This will be hard since many parents travel from far distances, and you might consider alternating locations in order to accommodate families.
  9. Ask parents for help from others. For example, perhaps a parent works at an office building that has a meeting room you can use on a weekend, and/or perhaps a parent works in a print shop and can create and print flyers or newsletters for distribution.  Talk with the spiritual leader of your church to inquire about meeting space, or maybe meet at a local playground or park.
  10. Plan the content of the first 2 or 3 meetings. Ask people what they want to learn about at every meeting.
  11. Set up regularly scheduled meetings: the last Sunday or first Saturday of every month…be consistent. You may want to poll several parents and ask what day and time works best before confirming a day. Evenings may work better for some while others prefer weekends. You might need to alternate day or night meetings, or  decide to have parent only meetings alternate with weekend family gatherings.
  12. When planning events, you’ll need to always call people to encourage their participation. Word of mouth and personal chats are the best invitations. Again, What’s App is a great tool to utilize.
  13. Meetings can be as simple as a social gathering at a local park where everyone brings something to eat or drink.  They don’t always have to be content driven. Allow opportunities for parents to share their stories; we learn from each other!
  14. Circulating flyers at hearing clinics, health offices, schools and community centers serving children with hearing loss.
  15. Promote your group meetings by word-of-mouth. Parents like to be invited, not told to attend. The main force behind motivation is that people want to feel they belong, and that they have friends. Build relationships.
  16. In places where resources are more available, start a newsletter. Keep it simple and informative. Ask everyone to contribute (parents, practitioners, family members) but keep the tone of the newsletter educational and supportive. Invite children to draw pictures that can be printed in the newsletters. If possible, include photos too!
  17. Be sure to make communication fun and interesting. It shouldn’t always be serious.
  18. Invite a professional audiologist, counselor, doctor, or teacher to present. For example, a pediatrician can talk about nutrition, an audiologist can talk about hearing tests and discuss troubleshooting hearing aid problems, a counselor can talk about building self-esteem. Special guests are attractions and may encourage parents to attend because of the person or topic.
  19. Find articles and printed information (internet has many resources) to share with people during every meeting.
  20. Find out what your parents need. Create a survey for parents with choices they can check off or prioritize. What are they interested in learning about: social-emotional growth, child behavior, hearing aid technology, cochlear implants, behavior management, communication techniques, cooking with kids, sibling rivalry? The list is seemingly endless.
  21. Structure your meetings so they have a beginning, a middle, and an end. For example, begin with time for parents to socialize, have your discussion or presentation, and then end with social time.
  22. Always have a facilitator to keep the meeting on track. Disallow people from dominating and telling their problems.
  23. Limit parent meetings to two hours. Family gatherings can stretch to 4 hours, depending on the activity.  When families must travel far, it makes sense to meet for an afternoon. Otherwise, keep the meeting succinct.
  24. Every meeting must have an agenda. It must have a bit of fun, a bit of education, and a bit of socialization.

Take caution:

  • Do not allow parents to gripe. Talking about problems is ok, but complaining is not allowed. Set this rule in the very beginning with gentle reminders.
  • Don’t let one person dominate any conversation. Assign a facilitator who can gently interrupt and allow others to participate.
  • Discussion groups are not personal counseling sessions. Try to encourage participation by asking people to be brief. One way to do this is to relate the concern to others so others can respond.
  • Stick to your agenda…don’t allow conversation to move away from the topic you planned. Say, “That’s a great topic. Would everyone like to have a meeting to discuss this next month?

Information from this article should be cited/referenced as: “Joanne Travers, Partners for A Greater Voice, Inc. Content derived from Essential Programs to Coach and Empower (2016). Ipswich, Massachusetts U.S.A. www.greatervoice.com”.

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Well-being Matters!

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Hearing health practices throughout the world are complex in that they include a spectrum of audiological and educational services that address diverse populations with varying hearing conditions and habilitative needs. The number of persons affected with hearing loss is currently estimated to be around 466 million worldwide, which is about 6% of the world’s population; the majority reside in low and middle income countries (The World Health Organization, 2018). Approximately 34 million children are affected by some degree of hearing loss globally. Recent analysis suggests this number is inconclusive and may very well be underestimated. The World Health Organization also states that more than 60% of childhood hearing loss could be prevented.[i] Further, hearing loss might not be the only disabling condition. Learning challenges, attentional deficits, and other physical disabilities may be present.

According to many developmental psychologists, caregivers have the most influence on children’s social, emotional, physical, and cognitive development when they have good self-perception, emotional health, economic stability, and skills to nurture children successfully. Because hearing loss carries considerable stigma in the developing world, it has always been the mission of Partners for A Greater Voice to instill positive caregiver supports to help parents realize what is possible.  The support and counseling they receive must therefore consider their psychological well-being. When parental caregivers feel good about themselves and explore their innate potential, it can lead to improved responsiveness to learn, develop skills, and acquire knowledge. Yes, well-being matters!

Parenting a child with hearing loss in limited resource communities around the world is undoubtedly challenging. Parents may have limited income and struggle to find social, emotional, and informational supports to help their children communicate and learn. Social stigma, insufficient access to Hearing Assistive Technologies, inaccessible education services, inadequate healthcare, poverty, and potentially no family supports can be other factors. In many low- and middle-income countries, children with hearing loss are unable to communicate at levels comparable to hearing peers and experience significant delays in communication, speech, and socio-emotional growth. Communication is especially important and necessary for children with complex needs. Many parental caregivers, albeit a single mother, aunt, grandparent or sibling, struggle with their children’s future and lack of emotional and social supports. Many parents live alone with their grief; sadness and loneliness emanate in far too many eyes among caregivers we meet.

Practitioners collaborate with the parents to inform and empower them. It is the job of every practitioner to educate and support the family. Yet practitioners might be the only professional caregivers encounter. Practitioners must find essential time to coach and engage caregivers not only as partners in their children’s development, but as independent leaders who are mentally prepared for their journeys. Ultimately, practitioners must balance the learning and communication needs of children with the emotional needs of caregivers and lessons that engage parents in the nurturing care they give tot heir children.

The complexity of the global hearing health industry and parenting children with hearing loss must therefore include strategies to effectively foster caregivers’ well-being. Caregiver engagement is critical to a child’s success. Practitioners who work with families must be equipped with training or interventions supportive of caregiver mental health and essential to igniting potential and building parental capacity. For this reason, PGV has published Coaching and Empowering Caregivers of Children with Hearing Loss, an approach to foster well-being.

[i] WHO, “Childhood Hearing Loss, Act Now Hear’s How,” (2016). https://www.who.int/pbd/deafness/world-hearing-day/WHD2016_Brochure_EN_2.pdf.

 

Information from this article should be cited/referenced as: “Joanne Travers, Partners for A Greater Voice, Inc. Content derived from Essential Programs to Coach and Empower (2016). Ipswich, Massachusetts U.S.A. www.greatervoice.com”

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Thoughts on Effective Leaders

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As I reflect upon the vast array of leaders for whom I have worked, studied or observed, I conclude that just being a smart person in whatever field does not qualify that person to be a leader. When I think about the dozens of parents who have spearheaded their children’s education and success, I admire the perseverance, integrity, and pure passion for wanting the best for their children. They began their journeys with little or no expertise in parenting children with hearing loss, and I have witnessed how these parents become strong leaders of their children’s development. Their resilient stories offer astonishing tales.

Being an expertise in a particular communication methodology isn’t the key factor in being an effective leader for a child with hearing loss. As recent research indicates, emotional intelligence may actually be more important in leadership than being intelligent or being an expert in a field. Daniel Goleman in his book Emotional Intelligence (EI) states; “EI abilities rather than IQ or technical skills emerge as the ‘discriminating’ competency that best predicts who among a group of very smart people will lead most ably.” While being smart or very skilled in a technical field are important aspects to leadership, a critical issue that relates equally to being an effective leader is one’s emotional intelligence.

What makes up emotional intelligence? Goleman identifies a key set of Emotional Intelligent characteristics. They include “the abilities to motivate oneself and persist through frustrations, to control impulses, to regulate one’s moods and not let distress impact the ability to think, to empathize, and to hope”. While these human aspects of leadership are not the elements of leadership we quickly recognize, the research clearly identifies them as critical to the effectiveness of leadership. Fostering leadership suggests that parents of children with hearing loss are forward thinking, resilient and motivated to engage in effective communication, trust and collaboration – notably pillars of leadership and characteristics of good parent advocates.

Information from this article should be cited/referenced as: “Joanne Travers, Partners for A Greater Voice, Inc. Content derived from Essential Programs to Coach and Empower (2016). Ipswich, Massachusetts U.S.A. www.greatervoice.com”

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