From Diagnosis to Action
Your child with a hearing loss can succeed – in school, in work and in life. It is important you keep this in focus, whatever your child’s age or degree of hearing loss. While you will have the support of many professionals, ultimately you as parents will make many decisions about what is in the best interest of your child based on his or her unique circumstances. As with all children, there is no magic formula for raising a child with a hearing loss. However, your child will succeed if you maintain a positive attitude, educate yourself about hearing loss, seek out the best resources and take an active role in your child’s language development and education. This article provides an overview on what to expect if your child is diagnosed with a hearing loss.
Emotional Impact of the Diagnosis
About 95 percent of children who are deaf have hearing parents (Mitchell & Karchmer, 2004). In addition, about half the cases of hearing loss in children is a result of unknown causes. Grief, shock, fear and denial are all natural responses for hearing parents to feel when they find out their child has a hearing loss.
Grief is a common emotion and an honest expression of disappointment and fear of the unknown. Grief that is not acknowledged or dealt with can lead to denial of a child’s problem, which in turn can lead to procrastination in taking constructive action. Acknowledging grief, painful as it may be, allows parents to more effectively nurture their child.
In addition to this initial stage of grief, parents are confronted with the immediate need to make decisions about their child’s future. Parents may consider requesting a referral to a qualified therapist to help them work through the initial emotional impact of learning their child has a hearing loss, and to develop strategies for making decisions about the child’s and family’s future needs.
From Newborn Hearing Screening to Communication Options
Newborn Hearing Screening
As a result of Early Hearing Detection and Intervention (EHDI) legislation enacted in 2000, most hospitals today screen for hearing loss before a newborn is discharged from the hospital. Early detection simply means identifying a hearing loss at a very early age, hopefully in the first few days of life. The initial exam is referred to as a “screening” because the results are not definitive. A follow-up diagnosis is required to confirm a hearing loss. While still in the hospital, newborns are screened by nurses, aides or other hospital personnel.
If an initial screening comes back “positive,” then a second screening and follow-up testing are performed to confirm whether a hearing loss is present and, if so, the type and nature of the loss. This should be performed by an audiologist (someone with an advanced degree and appropriate licensure/certification in evaluating hearing). It is important that parents not procrastinate on having the follow-up tests performed. Over half of newborns identified with a potential hearing loss are not given a second screening within the recommended three-month time frame. If it is ultimately determined your child has a hearing loss, every moment that goes by before the final diagnosis is invaluable time that cannot be regained toward putting your child on a path of intervention and getting the assistance your child may need for language literacy development.
Once a hearing loss is confirmed, your pediatrician should refer your child to an ear, nose and throat specialist, also known as an otolaryngologist, who can provide information on various approaches for your child based on his or her unique circumstances as well as rule out any underlying causes for the hearing loss, such as an obstruction in the middle ear. In addition, you should select an audiologist with whom you feel comfortable and whom you feel confident will help you successfully manage your child’s hearing loss.
Whomever you select will be someone you will work with closely, potentially for many years to come. It is entirely within your rights to “shop” for an audiologist by scheduling initial meetings with several practitioners, however, be careful not to shop for the sake of finding an audiologist who will change or alter the diagnosis of hearing loss, but to find someone you and your family connects with. When seeking an audiologist for your child, inquire whether your practitioner has experience working with pediatric patients and be sure to observe his/her level of rapport with your child during your initial visit. You can locate audiologists in your area by asking for referrals from your pediatrician and/or otolaryngologist, as well as by asking for referrals from other parents of children with hearing loss. To find an audiologist in your area, visit the American Academy of Audiology (AAA) at www.audiology.org or the American Speech-Language-Hearing Association (ASHA) at www.asha.org.
One of the most important, and most immediate, decisions parents of a child diagnosed with hearing loss are faced with is what communication approach, or approaches, to choose for their child. As a parent, you will find the information on communication approaches often conflicting and confusing, and one of your most difficult tasks will be to choose the best option for your child.
The decision-making process should include your audiologist and an otolaryngologist, as well as contacting other families in similar situations, visiting local school programs and learning about other resources in your area. Family support programs can be found through your local AG Bell Chapter (check www.agbell.org for a list of chapters by state). Ultimately, your decision will depend on your child’s unique circumstances, such as degree of hearing loss and the availability of programs in your community. Large metropolitan areas may offer several options, while rural areas may only have a few.
Parents should consider the following when selecting a communication approach:
- Read about all the options available today. AG Bell recommends Choices in Deafness, Third Edition by Sue Schwartz, Ph.D., (available from Woodbine House Publishers at www.woodbinehouse.com). Several Web sites can also help you learn about all the options available, including www.agbell.org, www.nad.org and www.deafchildren.org.
- Visit the available programs in your community. Call your local school district and ask for the person in charge of parent/infant programs for children with hearing loss, and make an appointment to visit the program. You can also visit www.oraldeafed.org for a list of private programs in your area. Even if you are unsure about choosing a private option, visiting such a program gives you a frame of reference for evaluating your public school’s program and for requesting specific accommodations.
- Communicate with other parents and professionals about local programs. What does your audiologist think of the local public school program? Is there a better one in a nearby school system? Ask your audiologist to connect you with a parent of a slightly older child who could give advice about the local programs. Also ask about the quality of the programs beyond the preschool level. Another good source of information is AG Bell chapter members. Visit www.agbell.org for a full list of chapters and contact information.
- Visit the AG Bell Academy for Listening and Spoken Language website at www.agbellacademy.org to learn if there is a Listening and Spoken Language Specialist (LSLS™) in your area. This professional can offer guidance on local resources and information on communication approaches.
- After you have called or visited programs and practitioners in your area and completed your research, make a list of educational options available along with your impression of the quality of each program and its potential to help you reach your family’s desired outcome for communication and language development.
Raising a child with a hearing loss can add a financial burden on a family’s resources. Investigate and take advantage of all the financial assistance opportunities available to you.
- Health care coverage. Although most major insurers will cover a cochlear implant, many do not cover hearing aids or an additional surgery should you choose to have bilateral implants for your child. Several states have now enacted legislative mandates for group and individual health care insurance companies to cover the cost of hearing aids for children. The same holds true for any type of therapy you wish to pursue, such as speech therapy. Be sure to check with your insurance carrier to see what is, and isn’t, covered under your plan. Finally, ask your EHDI provider if there are hearing aid loaner programs available in your state.
- Medicare. If you qualify for Medicare, cochlear implant surgery may be covered but hearing aids are not. In addition, while much of the surgical procedure for cochlear implants might be covered, it may not be covered in its entirety. You must be sure of what Medicare will cover. The same holds true for any follow up “mapping” or spoken language therapy you have to pursue. Again, the policy for coverage is changing over time so it is important to stay abreast of developments in this area. AG Bell provides current information on its Web site and through Volta Voices.
- Nonprofit Assistance. Organizations such at the Starkey Foundation, AG Bell, Lion’s Clubs and many others offer financial assistance, grants, donation of hearing aid devices and other types of monetary support. Also, many speech and hearing and other educational programs for young children offer services for free on a sliding scale, depending on your income level. Check www.agbell.org for a complete list of financial aid options available in your area.
- Hearing Assistive Device Manufacturers. Another potential resource to consider is what type of financial assistance programs are available from the hearing aid or cochlear implant manufacturer you are considering for your child. These companies also offer assistance in contacting your health care insurance company or Medicare to obtain approval for coverage.
Most importantly, become an advocate for yourself and your child. It is only through the perseverance of parents like you that we have come this far in providing greater opportunities for children who are deaf or hard of hearing as well as future generations. You may want to get involved in local organizations representing children who are deaf or hard of hearing, in your local school programs, and with other parents to ensure the best possible outcome for your child, whatever communication approach you choose.
The article “Steps to Take for Access to Sound,” will provide an overview on what parents can expect after the diagnosis if a spoken language outcome is desired .
How Young Children’s Hearing is Screened and Evaluated
Hearing screening methods for infants and children are non-invasive and painless.
- ABR (Automated Brain Stem Response): Sounds are presented through earphones while the baby rests quietly or sleeps. Brainstem responses to sound are measured through small electrodes, which are taped on the baby’s head. These responses are processed by a computer.
- OAE (Otoacoustic Emissions): A small probe tip is inserted into the baby’s ear canal. It measures the function of the inner ear, or cochlea. This screening can also be performed on a sleeping infant.
- Behavioral Testing: These types of tests are used when a child is old enough to turn his or her head in response to sound or play a game. These tests measure the quietest sounds your child can hear and your child’s ability to understand words.
- Acoustical Impedance tests can be administered to children of all ages and can help identify middle ear problems (e.g., presence of fluid and status of eardrum) through a non-invasive and computerized technique.
Source: Volta Voices, March/April 2009