As parents of children who are deaf and hard of hearing (d/hh), we often find ourselves helping to build our own team to assist us in meeting our child’s needs while we learn to understand what it means to be deaf or hard of hearing ourselves. While our first entry into the world might be from a medical perspective, soon we learn how important early education is. The D/HH community also plays a critical role in giving us a sense of what is possible for our growing child. Once we find our way into this world, we find that many people, including experienced parents, have made it their life’s work to support other parents of young children.
Here are some of the professions outside of audiology and physicians specializing in hearing (mentioned in the Family Guide as whom you can expect to meet and may want to seek out during your child’s early journey). Certainly, not all families connect with all of these various providers. For more information, seek out your parent-to-parent organization, including your local Hands & Voices Chapter.
These are the birth to three-year-old specialists in child development, sometimes known as Part C services. Part C is the birth-to-three section of the special education law knows as the Individuals with Disabilities Education Act IDEA). You may have been referred by your pediatric audiologist to early intervention, or you can refer yourself. It is likely that your first contact would be with a service coordinator, who can tell you what is available in your area and connect you with EI providers who will come to your home.
Educational audiologists are hearing healthcare professionals who work in schools with children who are deaf and hard of hearing to make sure they receive appropriate communication accessibility and other supports in the classroom. They assess children’s hearing and functional listening skills, identify and fit hearing assistive technology, manage and troubleshoot equipment, manage classroom acoustics to reduce background noise and reverberation, teach the child and staff how to use hearing assistive technology appropriately, and advocate for classroom accommodations. Educational audiologists are an important member of the IEP team as children transition from early intervention to preschool and on to school-age services. Beyond the classroom, they coordinate hearing screenings for school districts (birth to 21) in an effort to find children who may benefit from additional supports.
For more information visit the Educational Audiology Association website.
“What a difference it makes when you find a professional and a team who is the right fit for your child’s particular needs.”
Additional supports you may encounter: (see https://www.babyhearing.org/language-learning/additional-services)
“If our child’s center-based preschool teacher had not tracked her listening skills, we would not have noticed her progressive hearing loss at age four so quickly. The educational audiologist confirmed her findings, and that fast-tracked us to more powerful hearing aids. Our late-identified daughter did not have time to lose during those critical language-learning years. Find or build your team that works well together on behalf of your child.”
JCIH notes that all families should be offered a genetics evaluation and/or counseling, to understand how parents pass some of their genes/characteristics to their children. This information can possibly provide families the cause, any potentially associated conditions (kidneys, heart, vision), likelihood of worsening of hearing loss (progressive hearing loss) and likelihood of hearing loss reoccurring in future children or the children of close relatives. While hundreds of genes and many different syndromes have been identified, not all currently can be tested. This is a rapidly changing field and parents are encouraged to talk to a genetic counselor for the most current information before deciding about genetic testing. https://digitalcommons.usu.edu/jehdi/vol4/iss2/1/
Annual vision screening or testing is recommended since vision issues are more common in children who are d/hh. Ensuring good visual access is important, and changes in vision can occur over time.
JCIH recommends a referral to counselors and infant mental health specialists for families experiencing any difficulties with adjustment or attachment. Also, professionals knowledgeable about finding concrete supports for families to reduce stress, such as food, housing and other assistance are critical. Families can ask for this support directly from their IFSP teams or contact your Early Intervention agency here for more information. Information about how to best support Infant mental health should be available to all families through the EI program.
Parents can benefit themselves and contribute to the knowledge in the various fields of study. Ask at your clinic or EI program about research opportunities that are available. Hands & Voices posts them regularly on social media.