Children and Youth with Special Health Needs (CYSHN)
Next Steps: After Diagnosis
Hearing Level / Hearing Loss
Family Support: Family Communication
On this page...
|HEARING LOSS IS A FAMILY AFFAIR!|
Regardless of who it is, a hearing loss affects everyone in the family in one way or another.
Relationships with family members are based on communication. Parents expect to be able to communicate with their children. Sisters and brothers expect to be able to communicate with their siblings. Grandparents look forward to the day when they can tell stories of their own childhood to their grandchildren. Everyone in the family will experience the impact of hearing loss regardless of whether it occurs in a hearing family or a deaf family.
One goal of any family is to adapt to the baby's hearing loss in a positive way that “facilitates” communication. “Talk to Me” that is the message. Talk to me, talk with me, hear me, and communicate with me.
As family members, we are eager to communicate to our children about the song of a bird, the vision of a sunrise, and the colors of a rainbow. We want to teach our children the words of nursery rhymes, the words of songs that we grew up with, and the words that describe our feelings. In this section parents and grandparents share some of their stories with you.
|FAMILIES TALK ABOUT FEELINGS|
"My daughter had her hearing screened at birth. She was referred for a rescreening. I didn't think it was anything - but I took her anyway. I have two older children, and it was such a hassle, but I did it. I loaded all the kids in the car and took her back to the hospital where she was born. After a few minutes, the nurse came out and said that she did not pass. She tried to alleviate my fears by telling me that sometimes a baby's hearing ends up being normal. I was told to go to an audiology clinic to have her hearing checked out. I didn't start to worry yet - but I couldn't sleep just thinking that something might be wrong. She was two weeks old by the time I got an appointment at the audiology clinic. Again - she did not pass the screening. Now I was getting anxious. What is the matter? There was no history of hearing loss in my family or in my husbands' family! I thought surely, the next test would show that everything was fine.
The next step was to schedule her for a diagnostic evaluation. The audiologist told me that some clinics do not sedate the baby for the diagnostic evaluation - but at this clinic they do. They wanted to make sure that she was quiet enough that they would be able to get the testing completed. I brought her back a week later and she was given chloral hydrate to drink to make her sleepy. Sure enough, after I checked her in, and they gave her the medication - she was fast asleep!
I recall with vivid detail the exact moment that I learned of my baby's hearing loss. I felt like I was moving in a fog. I had many questions and did not know which ones to ask first. How did this happen to me? I was totally unprepared emotionally to deal with the news that my daughter had been born with a hearing loss.When my daughter was referred after the hearing screening, I was anxious waiting for the diagnostic tests to be scheduled and completed. I was frustrated because I didn't know what to do. I felt helplessness because I had no control over the situation. When we finally found out the results of the diagnostic tests, I was relieved to know for sure one way or the other. At the same time, I was very sad about it. I thought, if I only had someone to talk to who could understand the way I was feeling”.
Parents and family members may experience a wide variety of feelings when they find out that their baby has a hearing loss. The feelings that this parent describes are a very common reaction: anxiety, frustration, helplessness.
Learning about the feelings that other parents of infants with hearing loss experienced may help you sort out your own feelings. Several parents and family members were asked to share their story about their initial reactions with you. Parts of their stories can be found by clicking on the short videos listed on the left.
As a parent, there are many emotions that you may experience. Some parents react with a feeling of sadness. Other parents accept the diagnosis without much emotion and are just ready to take the next step. Some parents are actually relieved or happy to find out the diagnosis of a hearing loss.
What is your family culture? Your family culture is your family's beliefs, values, customs, traditions, and behaviors. It is the way your family copes with the world and with each other. Family culture is passed down from one generation to the next. Family culture is influenced by your ethnic background. Your family culture guides many of the decisions you make when you find out that your baby has a hearing loss. Your family culture influences the decisions you make as your baby learns and grows.
“When I found out that my grandson had a hearing loss, I didn't want to believe it! I have known other parents of children with a hearing loss, but I never would have dreamed that it could have happened in my family. I didn't know what to do - what to think!
I chastised myself for feeling this way. After all, I had been a third grade teacher in the public schools for many years. This was not the first time I had known of a child with a hearing loss. I knew in my heart that children with hearing loss had the same potential as anybody else - all I had to do was to learn how to cope with this new challenge. I knew that a hearing loss could happen for any number of reasons. We may or may not ever find out what caused his hearing loss. The important thing was to learn how to best help my grandson learn how to communicate, learn, and grow up to be a happy child and adult
|GOALS AND EXPECTATIONS|
“I expect my son to grow and develop normally just like a hearing child. I expect to mainstream him in regular schools and give him the most normal life I can possibly give him. I have the same goals and expectations for my child as any parent would. I wanted him to be able to communicate, to learn how to read and write. My biggest goal is that I want him to go to college. I want him to go to college, get an education, and be happy. I don't see his hearing loss holding him back in any way, shape or form. I think he will be all right.”
“The thing that has helped me so much in watching my daughter grow up is recognizing that she has become just such a special young lady. I believe that her personality has been shaped in part because of her hearing loss. She is the person that she is because of the challenges she has faced. I wouldn't trade anything for the young lady that she's become.”
Families have different processes for setting family goals. Some families have an informal process of talking about how they want their life to be. Other families may have a formal process of developing goals. When your family sets goals, your saying what you want, how you want to achieve it, and the steps that you will take. The process of setting goals for your children and your family lets you choose where you want to go in life and allows you to focus on the steps.
What is advocacy? Advocacy is saying what you want for your child and actively working with people in agencies and schools. Your purpose in advocating for your child is to accomplish goals that you believe are in your child's best interests. It is important to advocate for your child needs when you believe that something will benefit your child. The advocacy roles that families play vary and depend upon your family culture.
In the beginning, the process of advocating for your child's needs may feel awkward or overwhelming. This is a normal reaction. Many parents want to advocate for their child but feel like they do not know how. Learning the skills needed to be an effective advocate for your child will help you cope with new challenges.
To advocate for your child is to play an active role in planning your child's development. It is never to early to start thinking about his/her treatment and educational programs. You are a natural advocate for your child because you are your child's first teacher and role model. You know your child better than anyone else and you have your child's needs and best interest at heart. Below you will find a summary of the skills you will need to be an effective advocate for your child.
Gather Information - Learn about your child's hearing loss and develop appropriate expectations. Set goals for your child's programs.
Learn the Rules of the Game - Learn how program decisions are made and by whom. Learn your role so you can protect your child's best interests.
Plan and Prepare - Know that planning prevents problems. Read information that helps answer your questions. Prepare for meetings, use worksheets and other tools to document your child's progress.
Keep Written Records - Make requests for information in writing and write polite follow-up letters to document events, discussions, and meetings.
Ask Questions and Listen to Answers - Don't be afraid to ask questions. Listen carefully to the answers.
Identify Problems - When you have a problem, look at it from all sides. Use your knowledge to become a problem solver. Don't waste time and energy looking for someone else to blame.
Propose Solutions - Make suggestions about solutions to problems that result in a ‘win-win’ situation. Your suggestions will be in the best interest of meeting your child's needs. State and federal laws give you the power to make decisions for your child. Use this power wisely. As the parent of a child with hearing loss, you have two goals. The first goal is to make sure your child's unique needs are met. The second goal is to build a healthy working relationship with your child's team.
Your life long relationship with your child and knowledge of your child's history and experiences places you in a critical position to be his/her advocate. As an advocate, you understand your child's needs better than anyone else and have their best interests in mind when making decisions, choices, or taking action. As an advocate, you can teach others about your child's condition and needs. The stable environment and consistency you provide is important because health, educational, and other professionals will come and go over time.
Another aspect of advocacy is persistence in seeking a service or treatment that your child needs. If you are told that your child does not qualify for a service or that your child does not need a treatment, you may wish to get another opinion, appeal or seek counsel. Continue to tell health professionals and providers about your concerns until you are satisfied with their answers.
Finally, you may need to remind people who are working with your child to think about all of the needs of your child, not just how well he/she hears. Health care providers sometimes focus on one goal for your child's treatment or service and they forget how treatment affects other areas of your child's life. An example of this is fitting appointments or therapy into school schedules. You need to discuss your child's treatment plan with school staff to best meet their medical and educational needs. If the treatment or service plan is not working well, work with health care providers to improve it.
Human Services and Emotional Support Services
When a family member has a chronic condition such as hearing loss, the family often experiences extra stress and financial strain. Several medical and financial resources exist to help families in this situation. County human service departments have information about financial resources to help with the cost of medical care. Call these agencies directly to inquire about eligibility and request information.
A chronic condition can also place emotional strain on the family. County social service departments assist families with emotional concerns. Local mental health centers, psychologists and social workers also help with problems that may arise. Organizations for children and adults who are deaf or hard of hearing also offer emotional support and other information to families.
Family Support Groups and Networks
Family-to-family support is often helpful because it allows parents to talk to other parents of children with hearing loss. Parents who have a child with the same or similar condition can give encouragement and support with understanding that comes from experience. This helps to reduce stress and emotional concerns. It is also a valuable source for information. Family-to-family support gives families insight into options to manage the condition. You can find informal networks of parents through your doctor, pediatric nurse specialist, audiologist or social worker.
Finding or starting a support group for teenagers who are deaf or hard of hearing or teenagers with other chronic conditions may also be helpful. Involving your child in support groups gives them a chance to talk to other teens with similar concerns. Adults who are deaf or hard of hearing may be asked to speak with the group to provide teenagers with insight and information. Support groups may also be available for families. Check with your health care provider, school district or local hospital to find out if there is a group in your area. You may be able to start one with the help of a social worker or nurse. Informal support is sometimes available to families through health education programs.
Recreation and Play
Recreation and play are important to children for both social and physical development. They provide an opportunity for children, regardless of their needs or abilities, to have fun with friends, family and people in the community. A hearing loss should not prevent participation in recreational activities. Minor inconveniences related to a hearing loss can be resolved with visual cues, use of an FM system, or an interpreter. Inform group leaders or coaches about special needs. Check with your child's physican regarding restrictions in your child's activities.
Public recreation programs available in communities must meet the Americans with Disabilities Act (ADA) requirements to make them accessible to children who are deaf or hard of hearing. Park and recreation programs and public facilities may need to use equipment that make activities accessible such as TTY/Interpreters, reader boards and closed caption (CC) devices. Captioned showings of new films or performances are offered at some theaters. Contact local theaters or advocacy groups for persons who are deaf and hard of hearing for more information. The Family Support Connection at Lifetrack Resources also has information.
Involvement in social and physical activities builds positive self-esteem. Follow your child's areas of interest and encourage new activities. Be creative and flexible in planning your child's activities. Summer camps for children who are deaf or hard of hearing may be available. Examples are Camp Sertoma and Camp Courage. Your school may also offer local or regional recreation programs. Contact your local school district for more information.
Many families enjoy traveling together. Even short vacations close to home are relaxing and enriching for the family. Traveling with persons who are deaf or hard of hearing and who require medications or special treatments takes extra planning. Preparing ahead helps the trip run more smoothly. Many tourist attractions, including national monuments and theme parks such as Disneyland, offer interpreter services. Before arriving, contact the tourist attraction for more information. Bring enough medication and supplies including hearing aid batteries for your entire trip. Put medications in carry-on bags to avoid problems with lost luggage or delays. Speak with your child's health care provider about your travel plans. Ask the provider to draft a card or letter that describes your child's condition and care needs. Bring a copy of the card or letter with you when traveling.
Remember to bring health insurance information and cards. The International Association for Medical Assistance for Travelers (IAMAT) helps travelers locate an English-speaking doctor in foreign countries.
Safety is especially important for children with a hearing loss. Crossing busy streets and riding bicycles in the neighborhood can be dangerous because warning signals may be missed. Children who are deaf or hard of hearing must be taught to cross streets carefully. Use special equipment for recreation or sport activities such as bike helmets, bike lights and reflective clothing. Mirrors on bicycles are a necessity.
Provide ear protection for your child and yourself during activities with high noise levels. This includes activities such as attending music concerts, snowmobiling, watching fireworks, hunting, and exposure to loud vehicles. Earplugs are inexpensive and a good investment because cotton does not protect hearing. A medical identification bracelet or necklace can alert people to your child's condition if appropriate. Identification items are available from several sources, including the MedicAlert Foundation, drug stores and pharmacies.
SiblingsBrothers and sisters of a child who is deaf or hard of hearing may have concerns other children do not have and have many adjustments to make. They may have mixed feelings about their responsibilities to their sibling with special health needs. They may feel guilty about not having a special need or jealous of the sibling who has interesting special equipment. Siblings may also feel angry about not receiving as much "attention" as the child with special health needs. As they get older, there may be concerns about the genetics of hearing loss and whether their own children are at risk for inheriting a hearing loss. Provide them with information to help them understand the condition.
Parents can help siblings adjust in several ways. They can give each of their children individual time without interruption. They can also assure the children who do not have a hearing loss that their feelings are okay. Relationships between siblings should stress friendship rather than care giving. Siblings may benefit from the support of a person outside the immediate family such as a relative or trusted friend. Other sources of support include teachers, coaches, counselors and spiritual leaders. With support, children can grow through the experience of having a sibling with special health care needs.
|FREQUENTLY ASKED QUESTIONS|
What is family culture?
Family culture is your family's beliefs, values, customs, traditions, and behaviors. It is the way your family copes with the world and with each other. Family culture is passed down from one generation to the next, and is influenced by your ethnic background. Your family culture guides many of the decisions you make when you find out that your baby has a hearing loss. Your family culture also influences the decisions you make as your baby learns and grows.
Where can I find out more about family culture?
Two parts of family culture are routines and rituals. Routines are familiar patterns and habits which your family relies on to help manage life. Rituals are traditions that your family inherits or creates from your personal beliefs. Rituals and routines provide children with a sense of identity, stability and consistency that is a cornerstone to growing up. Traditions have always been important in how we function as families. As families grow and change, so do their rituals and routines.
What is advocacy?
Advocacy is saying what you want for your child and actively working with people in agencies and schools. Your purpose in advocating for your child is to accomplish goals that you believe are in your child's best interests. It is important to advocate for your child needs when you believe that something will benefit your child. The advocacy roles that families play vary and depend upon your family culture.
Information on this web site was obtained from the Infant Hearing Guide developed in a cooperative project between the University of Arkansas for Medical Science, Arkansas Children's Hospital and the University of Arkansas RRTC and we would like to acknowledge their work.
THIS INFORMATION DOES NOT PROVIDE MEDICAL ADVICE. All content, including text, graphics, images and information are for general informational purposes only. You are encouraged to talk with your doctor or other health care professional with regard to information contained on this web site. After reading this information, you are encouraged to review the information carefully with your doctor or other healthcare provider. The Content is not intended to be a substitute for professional medical advice, diagnosis or treatment. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE, OR DELAY IN SEEKING IT, BECAUSE OF SOMETHING YOU HAVE READ ON THIS web site.
|Updated Wednesday, 25-Jul-2012 16:51:23 CDT|