Receiving this information was not something we expected or could’ve been prepared to hear. Our loved ones didn’t know how to help when we received a hearing loss diagnosis.
We had no family history of hearing loss. Initially, when our baby failed the infant hearing screening, they told us it was probably “just fluid in his ear canal.” After we returned two weeks later for the more in-depth testing, the doctor gave us the results in one swooping sentence. He proceeded to tell us our son would get fitted for hearing aids, perhaps be a candidate for a cochlear implant, and possibly go to mainstream high school.
Wait. What? How could this be?
We had gone into the testing expecting to find out our baby had “typical hearing,” only to find ourselves being told a short time later he had severe to profound hearing loss.
Hearing loss. What? High school? How could this be? Our baby was only two weeks old.
We left the hospital in a daze. Appointments were scheduled for genetic testing, audiology, meetings with early intervention specialists, and things began to be set into motion.
We were in shock. There were no words.
The truth was, though, there was little to no time to process any of the many feelings we were experiencing. It was time to roll up our sleeves and get to work. Our job as parents was to advocate for our son. We had to learn everything we could about something that felt like a foreign language.
“We had to learn everything we could about something that felt like a foreign language.”
And here’s the thing. What I didn’t anticipate while I was dealing with my own emotions was that some of the people closest to us would also go through a period of denial and lack of acceptance. While we were busy educating ourselves, getting our son fitted for hearing aids, and doing all the things necessary to ensure he would have the best opportunities possible, I soon learned many people didn’t know what to do or say to help.
Over 14 years later, with the gift of perspective, I can wholeheartedly say that what I wanted most from people early on was to know they understood. I wanted those initial feelings of sadness, grief, anguish, and worry to be validated.
Instead, every time someone said, “He will be fine,” I felt like my feelings were being minimized. I often found myself stuffing my fears deep down inside. Even though in time I accepted our son’s diagnosis, it didn’t mean I stopped worrying. That concern did not mean I loved him any less. But I rarely felt comfortable voicing those feelings, for fear of being judged and looked down on as his mother.
I wanted the best for him. But, anytime a parent gets a diagnosis of anything-other-than-typical, there is a process you go through to accept and understand what it entails.
Here are some helpful things that can be done if a loved one’s child receives any diagnosis:
First and foremost, avoid minimizing the gravity of the situation. Let the person know you understand how hard this must be.
Empathize. Even if you have never experienced it firsthand, let the person know you care about how they are feeling.
Ask them to tell you more about hearing loss. Avoid making it the “elephant in the room.” Learn as much as you can. The more family and friends get educated about the situation, the more understanding they will have towards the child.
Offer to help in specific ways. No gesture is too small. Whether it is babysitting so they can go to an appointment, or bringing over a hot meal, keep offering. The support will help lighten the load.
Tell them they are doing a good job. Parenting a child with unique needs can make you question whether you are doing enough. There are rare moments you receive positive reinforcement. Everyone needs a pat on the back once in a while.
Let them know you love their child. A parent wants to know their child is seen. The whole child, not just the “special” part.
Listen. Allow the parent to share their fears and worries without trying to “fix” it. Often, parents just need a safe place to express themselves.
Invite them to do things. And when they have to decline, keep including them. Sometimes it just feels good to know your presence is wanted.
Give grace. Being a new parent of a child with hearing loss or anything else out of the ordinary can be exhausting and often lonely. In the throes of it, parents will probably make mistakes. Offer support rather than judgment. Until you have walked in their shoes, you do not know the reality of the challenges they are facing.
Finally, help to spread awareness and understanding. Advocating for their child will mean the world to them.
Read more: Hearing loss in children
What other helpful things can you suggest when a family receives a diagnosis?