It Will All Be OK

Steve Cook, Tue, 31 Mar 2020

Our journey from learning our baby has hearing loss to hearing aids and cochlear implants.

Our journey from learning our baby has hearing loss to hearing aids and cochlear implants.

Hello! If you are reading this, then you are starting on a journey that you probably didn’t expect to embark upon. Don’t worry. First and foremost, it’s all going to be OK.  

If that last sentence is the only information you take away from this article, that’s totally acceptable. But know that you are not alone, you can handle this, and yes, it will all be OK. 

Our newborn son has hearing loss

My name is Steve. I am a parent of a child who has hearing loss. Our son Miles was identified with some hearing issues at birth through newborn screening, and then confirmed with follow-up tests. 

After several more hearing tests, we opted for hearing aids at seven months. He had moderate to severe hearing loss in his right ear and moderate loss in his left. At the time, we were hopeful that this would be the fix that would be sufficient to enrich Miles’ young life. 

Struggling with hearing aids

When Miles was in daycare, one of the hardest things to do was coach teachers on the care and proper usage of his hearing devices. We would arrive at school to pick Miles up at the of the day and discover that his “ears” would be off or that the batteries were dead. 

To say this was frustrating is an understatement. We were trying to get our son ramped up to the level of his peers in terms of speech and language. But in order for that to happen, as we have learned, the hearing aids needed to be on for more than just a few hours a day. 
 

Finding another solution

After more hearing tests showed that Miles’ hearing was declining further, and after much deliberation, we decided that bilateral (two) cochlear implants (CIs) were the best route for our child to have a chance at verbal communication. 

We are a very musical family, and I am a professional musician. And, maybe selfishly, I want my child to enjoy the blessings that music offers, and simply have a full chance at hearing what life has to offer. 

It is here that I will touch on a delicate subject. There is absolutely nothing wrong with having a deaf child grow to become a deaf adult without the aid of hearing aids or cochlear implants. Do not feel pressured by anyone to make a decision that you are not feeling in your heart of hearts. Choosing the path forward for your child and your family is a huge decision, and one that you need to be comfortable with. 

The Deaf community is strong and full of great resources. Even with hearing aids or a cochlear implant, your child is still deaf. And the Deaf community can be very helpful on your child’s hearing journey. It helps to remember that for children (and adults), a CI doesn’t change who they are—it’s just a communication option. 

Another way to communicate

Since at first we couldn’t speak with Miles in the same fashion as with a hearing child, we felt some frustration about how to manage him. Pointing at the cereal was only getting us so far. And for a young child not to understand exactly what we were doing (e.g., bath time, playtime, mealtime), it was tough on him as well. We started learning what we should have learned as soon as we discovered his hearing loss—American Sign Language (ASL). 

ASL is not as difficult as you may think, especially with the basics. After you read this article, get online and get moving on ASL, especially if you have a little one. Just learning a few signs, such as for “milk,” “more,” “cereal,” “sleep,” “car,” “play,” “eat,” and “read” will already help you communicate more positively with your baby. 

There was a time when educators and parents used to worry that using sign language with a child who has hearing loss would make them dependent on it and delay the process of acquiring verbal speech. More and more studies now show that teaching a baby or toddler sign language not only allows parents and caregivers to effectively communicate with them before they’re able to speak, it helps with the development of language skills whether they are deaf or hearing. In fact, for a deaf child, it will make the transition to verbal communication with the CI easier. 

Choosing the right CI for us

When faced with the decision as to which CI company to have in our lives, we didn’t really hesitate when we chose Advanced Bionics. AB had the features that are important to us: technology upgrade anticipation, easy Bluetooth™ connectivity, waterproof options, and compact batteries for Miles’ little ears. 

The support that comes with the products is second to none, and they will help you in this stressful, crazy time as you ramp up and get used to using the devices. Plus, we dig the color. We went with the bright blue “Carribean Pirate” color so we wouldn’t lose them in the mulch of a playground.

It will all be OK

To say the CIs have been a life-changer is an understatement. At first we had no idea what was developing in this process. Then, little by little, things started to change. We would say his name from across the room and he would turn. Miles started to make more sounds, then letters, and now he’s starting to say words. As a parent, I am almost giddy with anticipation to see what he will do the next day, and the next, and the next. 

I know how hard this journey can be. We talk to a lot of parents who are in various stages of this process, and the conversations are encouraging. Breathe, be patient, breathe, be involved, and breathe. That’s about it. All kidding aside, being the advocate and the driving force for your child in this critical stage is massive. The time you put in now will reap untold dividends down the road. 

Thank you for letting me share a little insight into our son’s hearing journey, and I hope it has offered a little clarity for your own situation. If you need any help beyond the scope of the AB representative’s technical questions, I am more than happy to help. 

Thanks again. 

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Written by:

Steve Cook

Steve is a professional musician and writer who has been touring the world for the past 25 years. An amateur historian and novice foodie, Steve currently resides in Nashville, TN, with his wife and two children. Steve is currently on a quest to find the perfect cup of coffee.

You can connect with Steve at instagram.com/shinybass.

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