The content in this section of the Sunshine Cottage website comes directly from the Oberkotter Foundation's website www.oraldeafed.org* and is reprinted with permission of the Oberkotter Foundation.

Family Support and Raising a Deaf Child

What kind of support do parents need?

Mothers and fathers who when they learn that their child is deaf or hard of hearing are often overwhelmed by a whole range of emotions. At the same time, they must quickly learn a great deal about practical issues and begin managing their child's tests and therapy. It's often a challenge to balance their own emotional demands with their child's therapy and educational needs.

Studies show that parents who become educated about deafness and join some type of networking or parent support group tend to better accept their child's deafness and move on to planning for their child's immediate and long-range needs. (You'll find many resources on this web site.)

Educators and therapists can help a child get a good start in the development of spoken language and teach parents how to carry out the same training at home. The more involved parents are, while maintaining a balance within the family, the more the deaf and hard-of-hearing child will benefit.

What role will parents play in the education of their deaf or hard-of-hearing child?

Parents and guardians have a major role in the education of their child, because they are the ones who will choose the type of education and support it at home.

Parents must become educated about different communication options in order to make their own informed decision that is right for their deaf or hard-of-hearing child and their family. Once parents decide to choose the oral option, they can and should expect support from teachers and therapists.

If you are a parent of a deaf or hard-of-hearing child, you will quickly become adept in the skills and techniques that work with your child, and become the best expert of what's best for him or her. While you will rely on your educators, you'll always remain the primary advocate and teacher for your own child. The Individuals with Disabilities Education Act of 1997 (IDEA '97: PL 105-17) is very clear on the role and rights of parents in the life of their child.

What about hearing siblings? What is their role in the deaf or hard-of-hearing child's life? How do you deal with siblings in terms of not making them feel left out?

A deaf or hard-of-hearing child does change the dynamics of a family. Parents will, of necessity, spend extra time managing the needs of the deaf child, time which other siblings used to enjoy and which they may resent losing.

Siblings react in unique ways. They can be the deaf child's best friends and strongest advocates. They may understand his language earlier than other peers (maybe earlier than parents) and may spend hours playing together. Siblings can be a tremendous boon to a deaf child.

There is no simple solution to the complex issues of sibling rivalries. Here are a few thoughts and suggestions:

• Sibling rivalry is a fact of life whether or not one of the siblings is deaf or hard of hearing. Knowing that it is normal may make it easier to handle.
• Most parents will work hard to balance the needs of all their children. If, once in a while, things get out of balance or you make a mistake, so be it. Forgive yourself and move on. Yes, parents are human.
• Balancing the demands of work, family, and a special-needs child is tough. If you need help, whether it's a babysitter or a psychologist, there's no shame in getting it.

How and when do you tell a child that he or she is deaf or hard of hearing?  Is this an ongoing process?  What types of reactions should a parent expect?

A child usually realizes at a young age that he or she is different from her peers, often because of his or her hearing aids or cochlear implant, and will ask about being deaf. It's best to wait until your child asks, which is the signal that he or she is ready to hear the answers.

The best way for parents to respond is to be brief, direct, and matter of fact. Answer the child's specific questions, but don't provide more information than they asked for. When they're ready for more information, they'll ask.

Young children usually do not ask a lot of questions about their hearing loss. More intense questioning umay occur around 9 or 10 years of age, when they will typically want to know why. Again, it is most useful to be honest and direct. If you know answers, share them; if, as is often the case, there are no real answers, be open about that, too.

What adaptations must be made to effectively discipline the deaf or hard-of-hearing child? What recommendations are there for behavior modification?

The deaf or hard-of-hearing child, as a family member, must be expected to follow family rules. Deafness must not become an excuse for misbehavior. When a deaf or hard-of-hearing child is treated in the same way as his siblings, he or she feels more a part of the family.

However, you may have to be clearer with a deaf child about what your expectations are. It may take a more conscious effort to make sure the child knows what is going on. Much inappropriate behavior results from lack of understanding, such as when a child is scooped up and put in the car without knowing where he is going.

Visual cues such as a calendar with drawings, written notes, or pictures of places visited frequently can assist children in understanding what is happening around them.

Audiology Questions

What are the first signs that parents should look for when they are suspicious of a hearing loss?

Unless a family has reason to expect the possibility of a hearing loss, some of the early signs may be missed.

You should be concerned if you notice that:

• Your infant does not startle to loud or sudden noises, or turn toward sound.
• By 8 months, the baby is not cooing, babbling, or laughing.
• By 12 months, the child is not trying imitate sounds and actions in turn-taking games, or understanding simple commands like "come here". Babies of this age should also try to attract attention by using sounds.

Studies have shown that mothers and grandmothers are likely to be the first to suspect a hearing loss in a baby, probably because they spend the most time with the baby and have more experience with the usual progress of child development.

Sometimes, hoping that suspicions are not true, parents wait before having their baby's hearing checked. However, it's important to test the child's hearing as soon as you suspect that there may be a problem. If there is a hearing loss, it can be assessed and when appropriate, the baby can be fitted with hearing aids.

What are the effects of newborn screening? Is this a diagnosis? If a baby passes the screening, is everything okay? If they fail, are they deaf or hard-of-hearing ?

The screening is a simple test done by an audiologist which takes only a few minutes to perform. It is not a comprehensive testing of hearing. Its purpose is to identify babies that need further testing to determine the presence of a hearing loss. If a baby does not pass the screening test, more thorough hearing testing is normally done before a diagnosis is made.

It is important for parents to realize that in screening, there can be "false positives." Screenings are not comprehensive. A baby may fail the screening, but follow-up testing can indicate no hearing loss. On the other hand, a baby may pass the screening, yet in time, a hearing loss may be identified.

How often should a child have his or her hearing tested?

Initially, when a hearing loss is suspected, it is recommended that a child undergo testing using an Auditory Brain Response (ABR) which does not require the child to respond; rather it measures brain activity. If the ABR reveals a hearing loss, more testing is usually done.

During the process of more accurately determining the exact degree of hearing loss, the pediatrician, the otologist, and/or the audiologist may recommend more frequent testing. Deaf and hard-of-hearing children are not easy to test. It will take a series of tests, given as the child gets older and can cooperate better, to fully determine the type and extent of the hearing loss.

Audiologists' opinions differ on how often a young child should be tested; most recommend that children under three years of age be tested every six months. After that, unless a child has an ear infection or is not responding as is expected, a comprehensive evaluation once a year should be sufficient.

How should you approach your child's first days of wearing hearing aids? What should you do when problems arise?

Be positive, happy, and firm. Your child will take his or her emotional cues from you.

At first, placing earmolds in your child's ear is going to be strange for you and your child, and you may feel fear or frustration yourself. It's important, however, not to share these feelings with your child, but to focus on the good that you expect the hearing aid to do.

A child will often accept the earmolds willingly in as little as a week. It helps to make sure that the child is rewarded by experiencing sound as the aid is applied, so be sure to talk with your child as you do it.

If a child pulls out the earmold, you need to calmly yet firmly replace it.

Start using the hearing aids at a time when you know that your audiologist or therapist will be available to take calls and offer help if you need it.

Many parents find that it helps to keep a diary of the child's reactions to sound. It will help you to see the benefit your child gets from the hearing aids, and make any difficulties feel more worthwhile.

Education Questions

How long will it be before you can expect to see results from intensive educational and speech training?  How long until a child begins to talk?

In a good listening therapy setting, progress should be obvious to parents in the first six months.

Learning to listen with the child's available residual hearing is a slow and steady process. Parents should be given an outline of development stages in listening and speaking, so they can identify each step a child makes. Some of these may seem small, but together they add to the ability to hear and speak.

Children develop a great deal of "speech" before words are first uttered.When a child begins to listen and make sense of what he is hearing, speech usually follows.

As the parent, it's valuable to keep talking, joking, singing and providing other auditory stimulation. If you have questions about your child's progress, talk with the educators, audiologists and therapists.

Why is it easier to understand some deaf children and not others?

Usually the speech of deaf children who are making good use of their auditory potential is easier to understand. This is because good listening helps the child hear his or her own speech, as well as helping him or her to pick up on the natural rhythm and inflection of normal speech patterns.

This is one major reason that early listening and speech intervention is important for a deaf child.

Is a free public education as good as a private oral deaf education?

This is a critical question for parents, as private education can be expensive. It depends on the program. Studies show that both public and private programs have great numbers of successful deaf adults as graduates.

Public schools vary widely in the resources they offer deaf and hard-of-hearing children. Schools are required by law to have special programs for deaf children, but they are not required to offer every option. You may or may not want the option offered by your district. Public schools have the option of contracting with private oral schools for educational services through the IEP (individualized education plan) process.

Private oral deaf schools and private therapists working with deaf and hard-of-hearing children offer individualized programs designed to meet specific needs.

Placement in either public or private programs for deaf or hard-of-hearing children occurs through the IEP process. If there is a disagreement between the parents and the school district regarding the educatinal placement of the child, there is a federally mandated due process procedure that follows.

You should have information on all options in order to make the decision that will help your child reach his oral potential.

How do you establish the foundation for reading? How do we teach deaf children phrases that are idioms and "plays on words"?

Reading is a challenge for deaf and hard-of-hearing children. It involves vocabulary, language structures, and concepts, which are not easy for them to comprehend in the same way that hearing children do. Nonetheless, deaf and hard-of-hearing children can become excellent readers.

Studies have shown that skills in understanding, speaking, and writing in complex language have a direct relationship with reading success. So, although you may be tempted to simplify your language and vocabulary when you speak with your deaf child, it's not really a good idea. Using complex sentences and unfamiliar words will stretch your child's understanding and develop his or her language more fully. You should use idioms as they occur to you and explain them as you would to any child.

You can help a deaf or hard-of-hearing child develop reading and writing skills by making them part of everyday experiences, with trip books, diaries, and so on.

Social Questions

The social interractions of the deaf or hard-of-hearing child is frequently a concern for parents. They want their child to be part of the school and neighborhood activities and to have friends. Deaf children have the same issues hearing children do. Some children are shy; some are very outgoing. Some make friends easily, while others need fewer friends.

Will my child be happy?

Most children are happy and enthusiastic about life. Children who feel secure, who have a good self-image, and who are loved as well as loving, are happy children. Deafness by itself does not cause a child to be less happy.

Parents must ensure that their deaf or hard-of-hearing child is not treated differently, that she learns to take responsibility for her behaviors, that she learns the give and take of life, and that she is not the center of everyone's attention.

These lessons offer the child realistic expectations toward life and social interaction. You may find it helpful to meet with other parents and/or observe other deaf and hard-of-hearing children to gather ideas and perspective.

Can deaf children play sports?

Many deaf and hard-of-hearing children love sports as do their hearing peers. If the child enjoys sports, he or she will most likely want to play; if not, a deaf child will avoid sports just as other hearing children would.

In sports, as in all other social interactions, deaf children should know the rules and practice. You also must teach coaches how to communicate with the child so that the hearing loss does not become an issue. Parents or older siblings can be a great help both in teaching sports rules and in practicing with the child.

Individual sports are also good for deaf children (e.g. tennis, golf, and swimming). Not every hearing child is an excellent baseball player, and the same holds true for many deaf and hard-of-hearing children.

What types of jobs will my child be able to get?

Deaf and hard-of-hearing people are doctors, lawyers, teachers, computer programmers, dentists, nurses, medical technologists, factory workers, mechanics, Mr. Moms, stay-at-home moms, designers, and so forth.

People with normal hearing are able to get good jobs usually because they have the appropriate education and/or training. The same holds true with deaf and hard-of-hearing people. Employers hire people who are skilled, have a good work ethic, who can follow directives, and who do their jobs responsibly.

Will he be a "normal" kid?

Deaf and hard-of-hearing children, like many other kids, will be as "normal" as they are allowed and encouraged to be. Kids will not be "normal" if they are treated differently, if they do not feel secure, or if they are not accepted as a vital part of a family. In this, as in most things, deaf and hard-of-hearing children are no different from those who hear.

With whom will my child be able to communicate? When will my child be able to communicate with his peers?

Many deaf or hard-of-hearing children who are orally trained will be able to communicate with whomever he or she chooses. The process takes time, and requires more deliberate care, but the outcome is communication with the world.

In general, the deaf or hard-of-hearing child should be allowed to make himself understood from an early age. Parents tend to interpret for their deaf or hard-of-hearing child, but it's more effective in the long run to let the child speak for herself as soon and as often as possible.

It's best to avoid interpreting as much as possible, so that your child can develop the ability to work out her problems. Having a protective parent in the middle of activities sends a message that the deaf or hard-of-hearing child can't take care of herself.

Most adults will make an effort to understand a deaf child. Children may be less patient, and initially ignore or dismiss a child whose speech they don't understand. You can help your child by creating situations where less talk is required, which allow the child to build rapport with others while his language skills are progressing. When a deaf or hard-of-hearing child has good skills in sports, with computers, in the rules of games, and in turn-taking and playing fair, other children tend to accept them more easily.

There will, of course, be times when people are either thoughtless or cruel about your child's hearing loss. Keep in mind that these same people are thoughtless or cruel to hearing people too, and that it's their problem, not yours.

How to help my child participate in conversations?

There are often situations where it is very difficult for a deaf or hard-of-hearing person to keep up in a group conversation. Even very capable hearing adults need help at these times. A conversation with one or two persons or more is manageable for a deaf or hard-of-hearing child if and when certain guidelines are followed:

• More than one person should not speak at a time
• Speakers should speak clearly in a well-modulated voice
• Speakers should turn toward the person being spoken to, as this gives a visual clue to the deaf or hard-of-hearing person as to the direction of the conversation
• Parents must think not only of the above dynamics, but also logistics to make it easier for the child to listen and speak, including appropriate lighting, round dining table, etc.

Remember that you or the deaf or hard-of-hearing child needs to teach these rules to everyone. They are not trying to be difficult; they're changing a lifelong behavior, which takes time. You or your child may have to coach them when they forget. Patience and a sense of humor will help.

Parents should try not to automatically interpret for their child; this indicates to the child that others do not understand him. It is helpful for the deaf or hard-of-hearing child to develop assertive skills and be able to ask people to speak more slowly and distinctly, to not cover their faces, or to look at them when they speak.

It's extremely important to take the time and effort to make sure that the deaf child is clued in and made part of conversations. Deaf and hard-of-hearing adults often report that they felt isolated in the midst of their families, when conversations flowed by over them, or when long conversations were interpreted or summarized to a sentence or two at the end for the benefit of the deaf and hard-of-hearing persons.

For example, meal time is usually difficult for families with a deaf or hard-of-hearing child as well as for that child. Everyone seems to want to talk at the same time and the result is that the child gets lost in the conversation. There are strategies to resolve this uncomfortable situation. A round dining table helps the child to see everyone's face. It helps the child to know who is speaking. It would also help that family members check to see that the child is tuned in or is clued in on the conversation. The child needs to learn responsibility for following as best as he can and asking for clarification.

*The Oberkotter Foundation is not responsible for the information or materials contained on any web site that links to the ODE web site. Links to the ODE web site are not intended as an endorsement by the Oberkotter Foundation or any of the organizations identified on the ODE web site of the individual or organization operating the web site containing the link. The Oberkotter Foundation and the organizations identified on the ODE web site make no warranties regarding the information or materials contained on any web site that links to the ODE web site.