Issues of Interest for Parents of Hard of Hearing Children

Getting An Early Diagnosis: It is becoming more and more common for infants to be screened for hearing loss. However, since this type of screening does not happen in all facilities in Minnesota, and since the screening system is not flawless, many deaf or hard of hearing children will not be identified until well after birth. Parents of children with mild or moderate loss often face a special challenge in getting an early diagnosis. Dr. Noel Matkin's examination of data in one state showed that children with severe or profound hearing loss were typically identified at about 16-17 months of age, while children with moderate hearing loss were diagnosed when they were between two and two and a half. For children with moderate or unilateral hearing loss, it was not unusual to find that they weren't identified as hard of hearing until kindergarten (from Families with Hard of Hearing Children). The later the children are diagnosed, the later the families are able to get the services they need.

One problem parents face in obtaining an early diagnosis for mild or moderate levels of hearing loss is "getting physicians to listen to parents when they question hearing, to make a referral to have [hearing] tests" says Cheryl Deconde Johnson, EdD (from Families with Hard of Hearing Children). Parents may need to be firm in trusting their instincts and insisting on hearing tests for their child if they suspect a hearing loss.

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Is Your Child Really Hard of Hearing? So what?: Children who are hard of hearing can often "pass" as someone with normal hearing. Often they do no use sign language and their speech is understandable. Consequently, even when a hearing loss has been diagnosed, parents may find that teachers, families, and friends do not understand why the hearing loss is a significant issue for you or your child. Sometimes people have a difficult time understanding that there is any middle ground between normal hearing and profound deafness. People may wonder why you are making a mountain out of a molehill when you seem upset about the diagnosis or when you ask them to make some accommodations for your child.

It is important to know that parents of children with mild or moderate hearing loss experience a period of grief and adjustment, even though, as some people may say, "your child is only hard of hearing." As Kenneth Moses, PhD., explains, "You are going through a grieving process. This is a normal, necessary process. You are not crazy or ignorant or stupid because you are feeling what you are feeling. This is the way it works. People are naturally feeling anxiety or guilt or depression or anger or fear."

Also, despite the terms "mild" and "moderate," these levels of hearing loss can have a significant impact on a child's ability to communicate. Research by Dr. Matkin and colleagues, for instance, indicates that "a child with an unaided "mild" hearing loss (pure tone average of 35db) misses 50% of conversational speech and lags two years behind his peers in language ability when he enters kindergarten. An unaided child with a 50 db loss (usually labeled moderate hearing loss) can miss 80% to 100% of the speech signal." (from Knowing the Ropes, 1996).

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Working with Schools: Because teachers and others in the school system may not understand the implications of hearing loss, a hard of hearing child can be at risk of experiencing academic difficulties. David M. Luterman sums up the problem this way:

Parents have several tools at their disposal in working with schools to make sure that these types of problems are avoided and their child gets the services they need. State and federal laws have been established to assure that children with "disabilities" receive educational services, starting at birth. As more thoroughly explained in the "education options" section of this website, these services are often provided through Individualized Family Service Plans (IFSP) or Individualized Education Plans (IEPs), as outlined in the Individuals with Disabilities Education Act (IDEA).

What is particularly relevant for many families with hard of hearing children is that educational services can also be provided through 504 plans. This refers to Section 504 of the Rehabilitation Act. The focus of IDEA's IEPs and IFSPs is to provide special education for children with disabilities; the focus of 504 plans is to assure equal access to services.

What does this mean for parents? It means that if a child does not qualify for special education services under IDEA, the child might qualify for accommodations under Section 504. For example, if a child is doing fairly well academically, the school may suggest that the child be moved from an IEP to a 504 plan. The 504 plan can cover many things that were previously in the IEP. There are pros and cons to using 504 plans versus IFSPs/IEPs in obtaining services, and there are many adaptations and services that could be especially important for a hard of hearing child no matter what type of plan is used. For more information on this, contact PACER.

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Social Issues: Parents of deaf and hard of hearing children, like most parents, worry about their children's social lives. Will hearing loss affect their ability to make and maintain strong friendships? Will my child's hearing loss affect their self-image? These are just a few of the questions parents ask themselves.

Parents of hard of hearing children may be particularly worried about whether their child will be stuck "in limbo" between the "deaf" world (where people generally use sign language and have a strong cultural identity) and the "hearing" world (where people don't understand what it means to have difficulty with oral communication). This worry will increase if parents meet hearing people who ignore their child because they are uncomfortable with hearing loss, and/or if parents meet deaf people who ignore their child because the child is "not deaf enough."

Are hard of hearing children really caught between two worlds? Mary Bauer, now working at the Deaf and Hard of Hearing Services in Minnesota, has written that:

On the plus side, parents may be pleasantly surprised to see how well their child compensates for his or her hearing loss, and how well s/he copes in educating others about being hard of hearing. Some parents will also find that, from the child's perspective, "hearing loss" is not the important issue you might expect - what the child is really concerned about is playing with their neighbor, making the soccer team, and doing well in school.

Often the initial grief process evolves into something positive, as parents realize that many of their greatest fears are never going to materialize into problems, especially in the social arena. As one parent described it, "you go from a situation where you are feeling sorry for yourself and your daughter, why us? And those kinds of things, to more of a "boy we sure are fortunate" and the people you actually start to feel sorry for are those people that haven't been identified" (from Families with Hard of Hearing Children).

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Should I learn sign language, cued English, or any other communication system?: Parents of deaf children wrestle with the question of what sort of communication system or systems will be best for their child - should my child be "oral," use sign language, and/or use some other system such as cued English? A surprising number of parents of hard of hearing child also wrestle with this question even when their children have good speaking skills and significant residual speech. Parents may be concerned about progressive hearing loss. They might hear stories about children who grew up hard of hearing then went on to learn signing later. They may want to be sure that their children fully understand what is being communicated in the classroom and social settings. They may want their children to get a taste of some of the pride of Deaf Culture even if their child is "oral." Parents may be curious about signing, cued English, or other options, but afraid to investigate it because their child is "only hard of hearing."

Parents have many options for learning about different communication methods and Deaf culture. Many organizations, websites, books, and videotapes can provide parents with easily accessible information. Obtaining information about a variety of options and issues can be overwhelming. It can also be very empowering.

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Meeting other parents: An important resource for parents is meeting other parents who have experienced, or are experiencing, similar concerns in raising hard of hearing children. Some parents may be reluctant to take the initiative in meeting other parents. They may feel that, "well, my child is only hard of hearing, I don't need to take this step." The parents may attend events for families with "deaf and hard of hearing" children and find that many of the other parents there are parents of deaf children, with whom they initially feel they have little in common.

For most parents, however, it is very useful to overcome these barriers and seek out other parents in similar circumstances. These parents can provide information and support in a way that no one else can. Parents of hard of hearing children can also draw strength from parents of deaf children, because of the many common issues they share. MAHI is an excellent place to meet other parents. The Family Support Connection can also connect parents to parents.

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