While she received invaluable advice that helped her raise her kids confidently, she was also faced with the hard truths of raising children with hearing loss. So, years later, when she began seeing viral videos of babies hearing for the first time, she says she felt a responsibility to share the “whole” truth, not just the joyful parts.
Through her online community, My Battle Call, Valli shares her family’s journey, including the parts that are hard. “It is through this truth others can feel less alone,” she says.
We talk to her about her experience with hearing loss and the honest community she’s built in a sometimes deceptive online world.
Q: Can you tell us a little bit about your experience with hearing loss before having children?
I really had no hands-on experience. We had no family history and I really never was exposed to hearing loss. It’s kind of surreal the first person with hearing loss I can remember meeting is my own son.
Q: When did you find out that your children had hearing loss? Do you know what caused it?
My son failed the infant hearing screening test at birth. Two weeks later we went in for an ABR and found out he has severe hearing loss. Both of my children have Pendred’s Syndrome which causes Enlarged Vestibular Aqueduct (EVA) resulting in hearing fluctuations.
Q: Where did you turn to for resources and support?
We were living in Cleveland, OH at the time of my son’s birth. We had access to many professionals at the Cleveland Clinic. We found Dr. Don Goldberg, a well-known and highly respected expert in AVT and hearing loss. We began working with him regularly, by the time my son was 6 months old. We also received AVT from the University of Akron under another renowned expert in the field, Dr. Carol Flexer. There was little to no online support at the time of our son’s diagnosis (pre-Facebook). I relied heavily on our audiologist and AVT’s.
Q: How did your kids adapt to school/social situations with their hearing technology? Were they confident? Were there struggles? How did you instill confidence in them?
We received invaluable advice early in our journey. We were encouraged to keep the bar set high for our kids—and they would rise up to it. We have never felt there is anything they can’t do. Despite having hearing loss, they are capable of achieving anything they set their mind’s to. I suppose our belief in our children has rubbed off on their view of themselves. They don’t see themselves as “handicapped” in any way.
“We received invaluable advice early in our journey. We were encouraged to keep the bar set high for our kids—and they would rise up to it.”
It was this early mindset that carried on into their tween and teen years. They are not without challenges and struggle differently with social situations and nuances. As language gets more complicated, following along in a group setting is challenging. My son (age 14) gravitates towards small groups. My daughter (age 12), however, seems to adapt very well to most environments. She relies more heavily on visual information and is good at picking up on cues.
Overall both my kids are thriving. They are excellent and enthusiastic students. Both are fierce competitors on the football field and basketball court. Empathy is a characteristic they both possess, probably due to knowing what it is like to be different. They are kind and good to their friends. They are less about being cool and more about being themselves. I think the characteristic that separates them is their GRIT. Perhaps having hearing loss has forced them to be more resilient and determined. This tenacity is a strength that will take them far.
Q: What were you thinking about when you wrote your FB post “Truth Talk”? What was your experience like when your children were fit with their first hearing technology?
When I began writing about our journey, I felt a responsibility to share the “whole” truth, not just the joyful parts. With that kind of storytelling, it means sharing the parts that are hard, too.
It is through this truth others can feel less alone. I occasionally share viral videos of a baby having an amazing reaction after getting their hearing aids. These videos appear very magical. And what I love most are the mother’s palpable joy. However; with that comes the other side of getting hearing aids and activation.
Not every child responds in a profound way. I think it is important to share with parents who may not have experienced the immediate “magical moment” the more mundane yet just as magical moments that may come later. Also, sharing this more realistic perspective helps dispel the myth that once a child is activated, the work is done.
Q: What kind of advice would you give parents of children with newly diagnosed hearing loss?
A lot of my pieces speak to the parent of children newly diagnosed. I try to avoid offering advice, rather; I really just want a new parent to know it is going to be OK.
I want them to know that saying it is hard does not mean you are not a good parent.
I want them to know experiencing feelings of grief, in the beginning, is normal and doesn’t mean you love your child any less.
I want them to know if they advocate for, love, accept, and support their child, it will be OK!
And in the end, they need to listen to and trust their gut. They know their child best. There will be a lot of opinions but they are the parent and no one has their child’s best interest at heart more than them!
Q: What is your goal with your Facebook page/blog about hearing loss? What reactions have you received from other parents, and what have you personally gained from the community?
I created an intentional space that would be supportive, inclusive, and respectful of every person. Very rarely do I witness unkind behavior—it is just isn’t tolerated in my space of the internet.
However; I strongly welcome diverse perspectives and personal experiences. Because, my tagline is, “There’s No One-Size-Fits-All Way.” I share that no one experiences hearing loss the same. And there’s no ONE way to navigate it.
We can learn from each other, support each other, and help the person to the left and right know they are NOT alone.
When my kids were newly diagnosed I didn’t have this kind of support from other parents. I feel a responsibility to provide a space where people feel inspired, understood, and hopeful. Also, by sharing the “real” stories of the challenges and triumphs, parents can feel less alone. Each time a friend or fan of My Battle Call says, “Me too! I feel the same way,” I feel like my work has meaning. I don’t want people to do things the way we have, instead, I want them to know there is value in their journey.
My daughter and I have written a children’s narrative book about her hearing loss journey geared to inspire early readers, young readers, and parents and teachers. We are hoping to sign with an agent who embraces diverse voices and perspectives. I also just launched my new website, www.mybattlecall.com , where I am providing lots of resources for parents, as well as a blog post, t-shirts, and printable material.
I am also a regular contributor on Today Parents, The Mighty, Military Spouse Magazine, and Her View From Home.
Q: I’ve read that you’re a military family. Hearing loss is the single injury that affects military personnel more than any other. Do you have any unique insights of living with hearing loss among the military community?
Yes! My husband is a Colonel in the Marine Corps. We have been married for over twenty years. Military lifestyle has been an added challenge raising children who have special needs. Frequent relocations and deployments have been an added stress due to the continuity of care. Although, we have become pretty good at managing it.
Many of my husband’s peers (including himself) deal with hearing loss. I think the key for the senior staff is to educate the young Marines about the importance of using hearing protection.