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My Child Was Newly Diagnosed with Hearing Loss. What’s Next?

Over the past year I have had the opportunity to speak with many parents, in various stages their child’s and family’s hearing journey.

Written by: Julie Swaim

Over the past year I have had the opportunity to speak with many parents, in various stages of their child’s and family’s hearing journey.

Although every story is different—each child has a unique audiogram and history including varied cultures and demographics—the one thing we all have had in common is wondering if we are “doing it right” or “doing enough” or wondering if we should be “doing something additionally or differently.”

The parents who have contacted me immediately following the identification of hearing loss in their child have been seeking to learn about all the options. Most have researched deafness on the internet, spoken with professionals, their families, and others in their communities and end up at a loss of where to go from there. Obviously, each person has their own personality and manner in which they make decisions. This in itself can create understandable angst for parents. 

I, for one, when making decisions, looked at the options, and possible consequences related to each decision. In our case of choosing the type of communication we wanted for our son, we took the approach of deciding what we wanted for our son’s future, and backtracked to see what we needed to do, early on, to have the greatest possibility of achieving this outcome. Of course, this was not an easy or overnight decision. We agonized, often questioned our decisions, and worried if we were doing the right thing and how it would affect our son’s life, career opportunities and most importantly, his HAPPINESS.   

We were fortunate, in a time without the internet or teletherapy, to link up with other parents with children with hearing loss—because we found a certified auditory-verbal therapist who had experience working with other children (and their parents) with hearing loss and teaching them to listen and speak.

Our dream for our baby was that he would be able to do whatever he wanted in life, with his hearing loss not being seen as a “disability.” That said, also we knew that as he grew, he would ultimately be the “decider” of how he wanted to communicate. We just wanted to make sure that he had the capability and ability to everything that he wanted, and we didn’t want to eliminate any options or opportunities for him.

In order to make this happen, we had to depend heavily upon his audiologists, auditory-verbal therapists, and teachers and tie-in with other parents who had children with hearing loss.  The professionals ensured that technology was appropriately fitted and short- and long-term goals established so we had a solid plan of action. But, during those early (and teenage years) it was other parents who were our life line.  They were the people with whom I could call to commiserate, celebrate, and talk through the current situation. I recall asking more than once….do you think this is a regular child thing or something due to his hearing loss? How do you keep hearing aids on his ears? Maybe, most valuable of all was just talking with another mom who has been or is going thru what I was knowing that “she got it.” 

Recently at a conference, I spoke with teachers and parents and they confirmed what has become common knowledge: parents are more likely to text, email or post on social media as opposed to calling someone on the phone. I get it; we are all really busy and if we have young children around it is easy to be distracted during a phone conversation. This made me think about the AG Bell New Parent Hotline and how I am frequently contacted by email, and then sometimes we text, and often then we set up a time to have a phone conversation. It seems as though, regardless of what sequence, the most in-depth exchanges occur when we talk on the phone or through Zoom.  Speaking over the phone helps me begin to understand about parents and their child and ask questions about their experiences. In turn, this allows parents to ask me questions some of which they would probably never think to ask in an email.​

So, if you are a parent in need of a consultation, don’t feel nervous about calling us. We’re here Monday through Friday to lend support. Call 1-833-LSL-LINK (1-800-575-5465) or email newparenthotline@agbell.org. For more information on the Listen-Learn-Link New Parent Hotline, click here.

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