You Just Found Out Your Child is Deaf
This area is primarily to help hearing parents who just found out their child is deaf and don’t know where to look/what to do. Below are questions I personally had and resources I wish I had when we found out our son is deaf.
If you have additional questions or resources, please send them here.
Our (very) personal story
First off, I want to let you know you’re not alone if you’re feeling scared, sad, alone, overwhelmed, clueless, and so much more. I promise it will all be okay and there is no shame in feeling these emotions. If you’re anything like me, it caught you completely off guard and wasn’t even something that was on your radar. If you’re like me, the first deaf person you met was your own child. I can only speak from my experience and hope that by sharing my journey it can help you. I also want to ask for you to reserve your judgment as I share my story from a vulnerable place.
When I was a junior in college, I found out I was pregnant. I terrified because this was significantly sooner than I expected I would be a parent. I always knew I wanted to have children but, as an avid planner, I wanted to graduate from college, land the perfect job, find the man of my dreams, get married, and buy a house before I started to even THINK about children. Obviously, my plans had to change, and quickly, to accommodate real life. I gave birth to my son in November during my senior year of college.
The day after he was born, the hospital staff performed the Universal Newborn Hearing Screening. He did not pass but they assured us that this happened all the time and was most likely due to excess fluid in his ears caused by a long labor. They told me they would test again before releasing us from the hospital. At that time, deafness wasn’t even on my radar. They had provided me with a reasonable enough explanation and I was already so overwhelmed with trying to figure out how to take care of a child that I didn’t think twice about it. The next day, our release day, they tested him again and, yet again, he did not pass. I still wasn’t concerned at this time. They said, again, this was common and to bring him back in a couple of weeks to screen, again. I still wasn’t concerned.
About two weeks later, we brought him back to be tested a third time. He still didn’t pass. At that time, he was referred to an audiologist for an ABR. I began to feel a little anxious. I didn’t necessarily know what his not passing meant but it felt like something wasn’t going according to how the doctors felt it should.
When Jacob was 4 months old, we received the formal diagnosis that he was bilaterally profoundly deaf. He did not respond to any stimuli. I had NO clue what this meant. The doctor showed me his audiogram. He attempted to explain what everything meant but I had a hard time understanding. He threw so much information at me about hearing aids, cochlear implants, and Early Intervention; all of which were new terms for me. I had no way to wrap my head around it. He sent me home with pamphlets and I shut down.
I came home completely numb and laid in bed. I cried for literally hours. I felt so lost and alone. I couldn’t process what everything meant. I felt like I had failed as a mother that I had broken my son. Obviously, I now know how erroneous that thinking was but at the time those were very much my true feelings.
Fast forward 14 years, I have learned so much and have watched Jacob turn into such an incredible human being. I have met and befriended so many amazing Deaf individuals that I wish I had access to when Jacob was born.
The first five years of Jacob’s life were full of ups and downs. We didn’t live in an area that had adequate supports or resources for deaf or hard-of-hearing individuals so I felt completely alone and clueless. I consider myself a lifelong learner so I spent many sleepless nights researching how to best help Jacob. When he was a year old, I went back to college for Speech Language Pathology. I knew at that time I wanted to work with deaf and hard-of-hearing children but couldn’t necessarily visualize what that would look like at the time. When he was 5, we discovered the Rochester School for the Deaf in Rochester, New York. That was a major turning point and a huge catalyst for Jacob’s growth.
While living in Rochester has been such a necessary and beneficial move, we have continued to see gaps in supports and resources. This is why I have made it my mission to help other families who may be experiencing something similar to what we experienced. I would love to share your stories, too. Please feel free to send them here.
What is an ABR?
An Auditory Brainstem Response (ABR) test "can be used to detect hearing loss. It checks your child’s brain’s response to sound. The test is mostly done on infants and children who may not be able to respond to behavioral hearing tests because of their age. Your child will not feel anything during this test," (NationwideChildrens.org). A more thorough explanation can be found below.
What is an audiogram?
An audiogram, "is a graph showing the results of a pure-tone hearing test. It will show how loud sounds need to be at different frequencies for you to hear them. The audiogram shows the type, degree, and configuration of hearing loss," (ASHA.org).
Above is a sample audiogram that shows the decibel levels and frequencies of common sounds. The yellow area is typically referred to as the "speech banana" and captures the decibel levels and frequencies of each consonant sound. If your child's hearing level falls below these sounds, they most likely are missing them during conversational speech. You can learn more about reading an audiogram below.
What is Early Intervention?
Early Intervention is a free program available to children from birth to age three. It is designed to help children who have disabilities or delays by working with Speech Language Pathologists, Physical Therapists, Occupational Therapists, Special Education Itinerant Teachers, and/or other professionals. It is an optional program but may be beneficial for deaf and hard-of-hearing children, especially if you do not feel equipped to meet their language needs or other needs that may be apparent. If you are in Monroe County, New York, you can learn more below.