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Decisions...Decisions

Professionals in education, other parents and adults who are deaf or hearing impaired all have strong feelings about the best way for your baby to learn and communicate. As parents, however, you have the right and responsibility to make decisions. In this section, you will learn about the decisions that you will find yourself making. You will also find out how to get the information you need to make decisions that seem most appropriate for your baby.
newborn
Early decisions
Amplification options
Communication options
Levels of family involvement
Information gathering
Decision making
Decision modifications

Early decisions

As soon as your baby has been diagnosed with a hearing loss, the decision making process begins. A child with a hearing loss needs access to communication and the world. Professional educators, audiologists, doctors, other parents and individuals who are Deaf or have a hearing loss will have ideas and opinions to share with you. You may be confused, because many of these ideas and opinions will seem to contradict each other. Actually, almost everyone whose life is touched by hearing loss wants the same thing: access to communication and daily life - for everyone.

You want your baby to grow up in touch with the environment. To help the child who can use residual hearing to keep in touch, you and your audiologist will be deciding on appropriate amplification.

If your baby is severely or profoundly deaf, will you explore the appropriateness of a cochlear implant? If you do, what information do you need to have before making such a choice? Who can give you information about how cochlear implants work differently with different individuals?

Helping a profoundly deaf baby to keep in touch with the environment may mean changing sound into light or touch. Today, you can choose from many devices that flash or vibrate when the telephone rings, when the alarm goes off in the morning, or when someone knocks at the door. Many Deaf individuals already use computers to stay in touch with their community. As your baby grows up, computers will continue to develop, bringing the whole world within reach.

You want your baby to communicate with as many people as possible. Although some professionals say that we live in a "hearing world", actually, we live in a "communicating world." Today, more than ever, our world is made up of different languages, and is full of bridges between those languages. Interpreters, email, relay telephone operators and TTY telephones are just a few examples of bridges. Real communication of real ideas can happen no matter what language a baby learns first, if the language is clear, meaningful, and used by many people in the environment.

You want your family to be involved in all aspects of your baby's development. The changes that happen in family life when a baby with a hearing loss is born can be unexpected, but they can also be challenging and exciting.

Amplification options

When babies are born, they are still developing their ability to use their senses, including hearing. Babies who can use at least some of their residual hearing will benefit from early chances to listen, provided by devices like hearing aids or cochlear implants. Using these devices to make sounds louder or clearer is called using amplification. Not every baby born with a hearing loss can benefit from amplification, but most can.

You will probably be making decisions about whether or not to use amplification or whether or not to consider a cochlear implant. To make any of these decisions, you will need to gather information from many sources: professionals, other parents, your audiologist, and the Internet.

Finding appropriate amplification is just the beginning, however. Because hearing aids and cochlear implants work differently than glasses, or ears with normal hearing, your baby will need you to guide those early listening experiences. From your early intervention service or your audiologist, you can learn ways to keep the hearing aids on and working well. You can make your house a good listening environment. You can learn how to call your baby's attention to sounds and what they mean. You can learn how to make speech as audible as possible, and how to encourage your baby to listen to his or her own voice as well as yours.

Communication options

There are important times for learning to listen, and there are important times for learning to communicate. We think that most hearing children have finished learning basic language communication skills before they begin kindergarten. Adults and children communicate through language, and babies with normal hearing begin paying attention to language and learning language as soon as they are born. Deaf babies with Deaf parents also begin to pay attention and learn as soon as they are born. Hearing parents and babies and Deaf parents and babies share a common language. They share that language because they can understand each other.

When parents have normal hearing and their babies have a hearing loss the communication pattern can be interrupted. The family needs to find some form of communication that everyone can understand. The decision about how to communicate in your family will be a very important one. Newborn baby

The types of communication most commonly used include:

  • Auditory-Verbal communication
  • Auditory Oral communication
  • Total communication
  • Auslan - Australian Sign Language

Sometimes a family will find a single form of communication works best, and sometimes families may use more than one form. For example, one family may choose auditory/verbal or oral methods for a child who is going to receive a cochlear implant at one year of age. Another in this situation may sign to the baby until the implant, and then transition to oral approaches. A baby with both Deaf and hearing family members may learn sign language while using residual hearing to develop spoken language. Another child may speak clearly but do best with an interpreter in school.

A decision about communication options will be the most helpful if parents gather information first. It is valuable to spend time talking with professionals and other parents, reading and scanning the Internet. Information gathering is the first step in making your early decisions. It is especially important to know that decisions can be changed, based on your child's communication needs. Over time, you will become a good observer of your child's communication needs. These observations will be a useful guide.

Levels of family involvement

Who should be involved in the early decisions that you make as parents of a deaf baby? Remember that everyone in your family will be a part of the community in which your baby grows and develops. Certainly, you as parents must make the choices, but there are others you can include by listening to their ideas. Baby with hearing aids

If you have other family members with hearing loss, they may be able to tell you about their experiences. While their hearing loss and your baby's may not be exactly the same, they have a personal perspective that can be very helpful.

Grandparents, aunts and uncles often become very interested in hearing loss when a baby with a hearing loss is born into the family. They may get information from many sources such as television, magazines, or the Internet and want to share it with you. Some facts will be more useful than others, but by discussing information with other adult family members, all of you can think more clearly about the things you want to know.

Brothers and sisters, especially those who are older, will be affected by the decisions that you make. By sharing what you learn with them, and talking about the impact (rewarding as well as challenging) that your decisions will have on family life, you make other children a part of the decision making process. Brothers and sisters sometimes feel left out as adult attention moves to meet the challenge of a baby with a hearing loss. When you pay attention to their ideas before making decisions you can help to reassure them that their position in the family is secure.

Information gathering

Each time you prepare to make a decision, you will want to gather information. Many of your sources will be the same each time.

The professionals that you consult will vary, depending on the decision. For amplification questions, your doctors and audiologists will have many answers for you, or better yet, several choices to present. If you are trying to find a communication approach to use at the beginning of your baby's language development, then contact different early childhood services in your area. They will be able to help you get information. The title of the professional helping you is not always as important as the experience that professional has with the question you are asking. A speech pathologist who happens to have years of work in aural habilitation (helping deaf children develop language and/or speech) may know more about communication techniques than a first year Teacher of the Deaf who did student teaching with high school students. Both may know information that you can use, however.

One of the most helpful sources of information can be other parents. As you talk with other parents, however, look carefully at the similarities between your children. Parents can be very supportive of each other, and know things that no one else can possibly know, but they can also be protective of the choices that they made. If your children have different needs, then your choices may be different.
Hard of hearing adults and Deaf adults can help parents by sharing personal experiences. Both groups have associations parents can find on the internet (Self Help for Hard of Hearing - www.shhhaust.org, Deaf Australia - www.deafaustralia.org.au and Deaf Children Australia - www.deafchildrenaustralia.org.au ). Individual mentors for parents and children may be available as well. Like parents and professionals, the opinions of Deaf and hard of hearing adults may be influenced by their own experiences.

You will receive a copy of Choices when you first visit Australian Hearing. Choices is produced by Australian Hearing and is provided free of charge to parents and carers of children who have a hearing loss. The book is called Choices because the information it contains will assist you in the choices you will be making. The book will point you to the people and services that can help you prepare the way for your child while providing you and your family with support and information.

Parents who like to search the Internet will find an abundance of sites, such as this one. Some sources are carefully researched, and some reflect opinions. Opinion based Internet sources may or may not have accurate information, but you will find many points of view.

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Decision making

Decision-making is a process. Before you make a decision, take a deep breath and realise that you are not deciding your baby's entire future. You are deciding to try a type of amplification or a communication approach, to see how your baby responds. The following steps can be very helpful as you think about what you want to do.

First, think about what needs to be decided. Be pretty specific. For example, you might say, "We want to decide on a way to give our baby access to people talking and environmental sounds." As you and your audiologist try different means of amplification, you will know what you are hoping to see from your baby's responses. In another example, you might say, "We want to decide on a way for our baby to understand us, and for us to understand our baby." As you and your Teacher of the Deaf communicate with your baby, you will be looking for indications that the baby understands and is trying to communicate with you. Twins in bath

Now, you can gather information. Think about your baby's needs and look at what parents and professionals have to say about amplification and communication options relative to those needs. If your baby has a moderate hearing loss, reading about work with profoundly deaf children will probably not give you the information you need. If your baby is profoundly deaf or for some reason does not benefit from amplification, then you will want to read about options for other children with a similar hearing loss.

When you have enough information, both from your visits to Australian Hearing and your own information gathering, it is time to make a preliminary decision. You are saying to your baby, "We know that you are special, and we think that these choices might work well for you."

Now it is time to try out what you have decided. Any decision will take commitment and action on your part. As you consistently use the amplification and communication approach(es) you have chosen, your baby will show you with his progress and preferences which way to go.

If you do not see progress, or you feel that the results of your first decision are not what you and your Teacher of the Deaf hoped for, then make changes. You may need to add something, adjust the hearing aids, or shift your communication strategies. Sometimes, you may find that a baby has made a decision different than yours. Once the hearing aids are working, your baby may go straight to using voice, or, no matter how much you provide auditory stimulation, your baby may watch you and the world very carefully, copying your gestures and facial expressions rather than your speech. That is just fine. All children will give parents signals about who they want to be. We just have to be alert and willing to adapt our expectations.

Decision modifications

You want to monitor your baby's progress at regular intervals as a yardstick to measure the appropriateness of what you have chosen for your child. Most of all, as parents, follow your instincts. You will know if your baby is excited, frustrated, moving forward steadily, or hitting plateaus in learning.

There are no "right" or "wrong" decisions. Give your choice a serious effort and be open to modifications in the original plan. As children grow and develop, what was a perfectly appropriate plan may need to be reconsidered. The communication mode that your baby needs at home may need to expand to several approaches after school starts. Many high school students make changes in their communication strategies to help them meet the challenges of later education. For example, a hearing impaired student may have more signing peers and may add Auslan to their communication approach. High school students using oral communication techniques may add captioning or an oral interpreter in the classroom. A Deaf student might decide to move out of a hearing support program and into a mainstream school for some classes to help prepare for university.

You need to make decisions along the way, but none of them are set in stone. As your baby grows and changes, new decisions will help fulfill new needs.


More information from www.babyhearing.org

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Information supplied by: Boys Town National Research Hospital and
The National Institute on Deafness and Other Communication Disorders (NIDCD)
Reproduced with permission.

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08-Nov-2015 12:18 PM (AEST)