BEGINNINGS is a North Carolina non-profit organization for Parents of Children Who are Deaf or Hard of Hearing, Inc.
In the clinical setting, many parents do not hear anything after you say, “Your child has hearing loss.” Parents often say that the audiologist continues to talk but they don’t understand and take in most of the information. They report feeling intimidated by the doctor, don’t want to ask stupid questions, or don’t even know what to ask in that moment. They are distracted by their restless child running around the exam room while they sit there trying to process the information. There are usually more toys in the waiting area, but less entertainment for them in the exam rooms.
A BEGINNINGS Parent Educator (PE) typically visits families a few weeks after the initial diagnosis confirming the hearing loss. The PE is able to meet with the parents in their home, after they have had some time to take in the new diagnosis. The PE talks about how the ear works and how to read an audiogram using simple terminology. A picture of the ear is shown to talk about how sound gets to the brain and what is going on in their child’s ear that is causing the problem. After they understand how it works, clinical terms can be introduced such as: conductive, sensorineural, bilateral and unilateral. The PE helps them see on the diagram what those words mean.
Next, the PE takes the “real audiogram” and a family-friendly audiogram. She explains that the numbers along the side show how sound is measured in decibels and gives examples (30 decibels is a whisper and 55 decibels is a conversation). Frequencies across the top are compared to the keys on a piano. Almost everyone understands a piano and how if one of the keys on a piano is not working then the song sounds wrong. The PE can then talk about when a child can’t hear one of the frequencies, the words sound wrong. Parents seem to be able to understand that analogy. They are grasping at straws, trying to sift through all that they have heard and read on the internet. They have heard a song on a piano, and this a real example that they can digest.
All of that teaching is done with a blank audiogram. Then, the PE draws a line at the top in blue and one in red to show them what a typical hearing person’s audiogram might look like. Only after the parents understand how to read the audiogram is the child’s audiogram shown for comparison. This explanation only takes five minutes, and gets a parent to really understand what the child can and cannot hear. They must understand what the child has access to and what is impossible for the child to get through audition to able to emphasize the importance of using hearing technology. If a parent chooses a spoken language approach, it is vital that they see what the child needs in order to gain access to sound. Parents who choose a visual language also need to understand how to read an audiogram so that they can understand what environmental sounds the child can access and areas where they may require technology such as doorbell lights and vibrating alarms.
Another important analogy a PE can use with parents deals with word recognition scores. Parents struggle to understand the audiogram, so it’s no surprise they don’t understand word recognition scores. They may think a word recognition score of 80% is great because that is a B. The PE explains that 80% is not a B, because this score isn’t about grades. The score is compared to a puzzle and how a toddler has 10-piece puzzle and is only getting eight pieces. Each piece is so big and it has lots of information on it that 80% seems adequate. However, when a child goes to first grade and has 100 piece puzzles, 80 pieces out of 100 missing means you can still see the picture, but it isn’t complete. Sometimes a large section is missing and sometimes it is the smaller details that add the important stuff that is missing. Finally, in fourth grade, where the children have 1000 piece puzzles then the child is missing 200 pieces of new information. This example means they are missing critical information in classes like math and science, and in social settings where the details are much more fun to hear.
Understanding what the child hears and how much of the information is really getting to the brain helps parents realize the importance of using hearing technology, or the importance of having an interpreter in the classroom. Explaining the audiogram in a way that a parent understands helps them focus and advocate in the schools for an Assistive Listening Device, preferential seating or any of the other accommodations that they may need. It helps them support their child’s needs at the playground or even around the dinner table where every child should feel welcome. Parents cannot advocate without information, and it is our jobs to help them really understand their child’s hearing loss in a way they can help their child and be able to explain to others to meet the needs of their child.