How To Talk To Your Child About Their Hearing Loss?

While driving back from an afternoon downtown at CHC where Sonya does individual speech therapy, reading/writing and group therapy; Sonya looked at me and asked, “Mom, why don’t you have CIs, but I do?”

I have long awaited this question. On one hand, I dreaded this moment because IĀ  worried I wouldn’t answer it well. That I would be too emotional. That Sonya would be left confused or feel isolated.

But I looked forward to it too. Sonya, now three-and-a-half, is becoming increasingly self-aware. She wants to wear her hair a certain way, and is becoming more vocal about what she will and won’t put on her body each morning. Sonya now online shops with me! Lately, she has informed me that purple is no longer her favorite color. “Just pink, mommy!” (And she knows how much I hate that color šŸ™‚

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Sonya’s street style (note: Peppa Pig hair bands which can also double as bracelets)

“When you were born…” I began, “you couldn’t hear. Your ears weren’t working. That’s why you have CIs. They help you to hear! When I was born, my ears worked fine, so I didn’t need to get CIs.”

I paused as I awaited Sonya’s reaction. She simply shrugged her shoulders, and said “Oh yeah. That makes sense.”

I sighed with relief. But I realize, of course, this is only the beginning of this conversation.

For this reason, I am so grateful that we have such a strong network of families with children who also have hearing loss. Each week, Sonya gets to spend an hour with her friends at group speech therapy. She loves these children (as do we) and looks forward to seeing them. We also do playdates with their families. I always thought it was sweet that she enjoyed their company so much, but now am beginning to realize the critical importance of maintaining these friendships. These children are about Sonya’s age. They also wear hearing devices. As Sonya becomes more self-aware, she will recognize that while she may be the only child in her mainstream classroom with CIs, she is not alone.

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Sonya’s Group Therapy at CHC last Halloween!

CampedUP, a summer camp for children with hearing aids and cochlear implants, is another opportunity for Sonya to connect with other children with hearing loss. We are so looking forward to another summer at this wonderful camp. Last summer, Sonya (at just two years) started putting her processors and coils back on her head by herself after this camp. This year she will meet even more children from all backgrounds. I especially love the fact that the camp is of mixed ages. Older children mentor the younger ones. Sonya is no longer the youngest and will have younger children looking up to her, too!

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Sonya at CampedUP last summer

Additionally, I am so grateful for our friends (those of children with hearing loss and without). For parents out there reading this with young infants, I urge you to find other parents to connect to. Whether it be me (happy to respond to emails or hop on a call!) or someone closer to you, the value of having these relationships is just so important.

Has your child asked about their hearing loss? How did you respond? As we are early in our journey, I would love to hear more ways to talk about this with our kids and I am sure other readers would agree!

 

 

Check out the Present and Future of Hearing Loss Research

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Recently, Yan and I had the opportunity to visit the Stanford Initiative to Cure Hearing LossĀ (SICHL). Not only did we get to tour the research facilities, but we sat down with several world-renowned researchers who are on the cutting edge of curing hearing loss.

Basically, SICHL’s goal is to create treatments that repair the damaged inner ear and restore lost hearing, quiet tinnitus and improve balance.Ā Stanford believes that hearing loss can be corrected and avoided. I strongly encourage other parents to follow their research and blog!

In particular, take a look at the following posts. These will help you to understand what the key areas of hearing loss-related research that Stanford is investing in currently, and what their goals are for the next five years:

Grillet Lab: Nicolas Grillet, PhD is focusing on a gene called Loxhd1, which is responsible for a non-syndromic form (i.e. no other symptoms) of hearing loss. His team is using mouse models to study the effects of different mutations in this gene.

Oghalai Lab: John S. Oghalai, MD has been studying how sound vibrates the hair cells within the cochlea, and how the loss of some of the hair cells affects the ability of the rest of the hair cells to work. Dr. Oghalai’s work will help to develop more effective treatments for patients with hearing loss and better hearing aid and cochlear implant programming algorithms. Notably, they have developed a way to image the cochlea in animals in a non-invasive way. They are hoping to do the same for human patients so that we can learn exactly why an individual has hearing loss!

Cheng Lab: Alan Cheng, MD lab has made major discoveries in the areas of cell regeneration. His lab has established one of the first models of mammalian cochlear hair cell regeneration (which before his lab was understood not to regenerate in mammals). His lab studies several models of mammalian hair cell regeneration and also has the ability to determine whether regenerated hair cells function as normal hair cells.

Dr. Cheng’s lab has also focused on ways to prevent certain types of antibiotics known as aminoglycosides from causing hearing loss. They are working to create non-toxic antibiotics in the next five years.

This is just a sample of the areas of research happening at Stanford. You can learn more about their ongoing investigations and goalsĀ here.

Do you follow any research you would like me to include here? Please let me know in the comments section!

 

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