Community Spotlight: Hearing loss no barrier for tenacious twin

We love it when people share their hearing loss stories with us on social media. Our community often provides comfort, encouragement, inspiration and support for others in similar situations. Recently we connected with one of our Instagram friends who we think has a wonderful story to share.

I had the opportunity to chat with Jen Muñoz, the mother of twins, of whom one has a hearing loss. This is their story: 

Jill: You have twins, but only one has hearing loss. Can you share a bit about their story and the hearing loss diagnosis?

Jen: That’s correct! My fraternal twins, Juliana and Gianna, are six-years-old. My son, Julian, has bi-lateral sensorineural hearing loss, as well as special needs. My daughter does not. They were born 14 weeks premature at just 26 weeks gestation on Christmas morning in 2009. Our very own Christmas Day miracles weighing only two pounds each. You know that saying? The one about the best gifts coming in small packages? I couldn’t agree more.

From the very beginning, Julian had a tougher time during his 77 day NICU stay than his twin sister. He suffered a bi-lateral brain bleed, known as an intraventricular hemorrhage, just two days after birth. Because of this brain bleed, Julian has what is known as Hydrocephalus (fluid in the brain) and had to get a life saving operation at just 5 weeks old to have a VP shunt placed in his head to drain the excess cerebral spinal fluid that was building up in his brain and causing extreme pain and pressure.

A couple of weeks after his operation was when he was given the newborn hearing screening. One of the NICU nurses gently pulled me to the side, gave my hand a firm and reassuring squeeze, and warned me beforehand that Julian might fail due to the fact that there still could be quite a bit of of swelling and pressure from having brain surgery, but that I had to remain optimistic.With my heart in my throat, I watched helplessly as they got zero response during the screening. I was told that he did indeed fail, but that it didn’t mean anything quite yet and they would try again closer to his NICU discharge date. Fast forward another 6 weeks in the NICU and they re-screened Julian. And again, he failed. I was devastated, but tried to remain positive.

With my heart in my throat, I watched helplessly as they got zero response during the screening.

After Julian was discharged from the NICU, we went to an appointment with an audiologist for a very lengthy, somewhat intimidating (all those wires!) auditory brainstem response (ABR) test, which tests the inner ear (cochlea) and brain pathways for hearing. It was revealed that Julian had bi-lateral sensorineural hearing loss with a moderate to severe loss on the left side, and a severe loss on the right side.

Here I was, with one of my tiny, four-pound preemie babies in my arms, the other peacefully sleeping in her stroller next to me. I felt raw and wrecked with emotion from everything my twin babes had already struggled with and fought for in the NICU for almost two and a half months of their fragile little lives. And I lost it. I held him close and sobbed. I mourned the hearing Julian would never have and feared what his future looked like with hearing loss.

Jill: That must have been really tough. Where did you find support or guidance after his diagnosis?

Jen: I found support through our HH/Deaf community where we live in Rochester, NY. I had heard of hearing loss prior to his diagnosis only because we live close to this community, but I didn’t know much about it. It was only after Julian’s diagnosis that I reached out to this community to learn ASL and how to properly care for hearing aids, as well as tips on how to keep them in the ears of a very mouthy baby!

When Julian was three, after researching relentlessly, we enrolled him in an inclusive preschool that specialized in children who have hearing loss and speech delays. This is where I met wonderful fellow parents of children who have hearing loss and wear hearing aids, as well as the wonderful teachers and providers who work at the school. These parents and I bonded over walking the same journey with our HOH children and confessed how clueless we felt sometimes. But we supported, uplifted and guided one another and continue to remain good friends to this day.

Jill: That’s wonderful that there’s a community of other parents of children with hearing loss so close to you! Many parents are worried that their children will never talk or adapt fully once there are first diagnosed with hearing loss. What differences do you see in the development of your son and daughter? 

Jen: I see big differences in Julian’s development as opposed to Gianna’s. Is this a bad thing? Absolutely not. No two children develop at the same rate or speed. Even twins!

What really helped Julian blossom and flourish was getting him fitted for his hearing aids as quickly as possible, allowing him to get comfortable with wearing them daily, as well as researching and enrolling him in Early Intervention services.

Once the shock of his hearing loss diagnosis passed, I fiercely and passionately dedicated myself to becoming Julian’s biggest advocate.What really helped Julian blossom and flourish was getting him fitted for his hearing aids as quickly as possible, allowing him to get comfortable with wearing them daily, as well as researching and enrolling him in Early Intervention services.

Julian received Speech and Teacher of the Deaf services as early as 8 months old. Immersing him in these therapy sessions and carrying over the material in our home gave our son the support he needed in order to succeed. When Julian began preschool at 3 years old, he didn’t use full sentences, only spoke 2-3 mostly intelligible words at a time, and his intelligibility (meaning how much of his speech is understood) was only at 30%. His twin sister was practically speaking in full paragraphs! By the end of the preschool year, with lots of hard work to overcome many obstacles on his part, his service providers part, and our part, Julian was at 65% intelligibility. By the end of his Kindergarten school year this past June he was at almost 90%. We have been blessed with phenomenal teams who see the light that is our son and believe in him as much as we do.

Each child is an individual who grows and learns at their own pace. We were told by doctors and specialists Julian had a slim chance of surviving his premature birth, yet he did. We were told he would never walk or talk, but he does. No one’s abilities are defined at birth. Julian is proof of that.

Jill: What about their relationship together? How do your twins interact with each other in regards to your son’s hearing loss?

Jen: They mostly communicate verbally but also use ASL from time to time. There are some days where Julian is overwhelmed and overstimulated and that is when he chooses to sign rather than speak. Gianna has become extremely aware of her brothers needs and has developed incredible patience and extraordinary compassion when it comes to interacting with him, as well as with other special needs children. She has proudly become his advocate at school and on the playground.

Jill: How do you encourage your children to talk to others about hearing aids and hearing loss?

Jen: We have taught our children that just like some people need glasses to help them see better, some people need hearing aids in order to help them hear better. Hearing aids and hearing loss are nothing to be embarrassed or ashamed about.

Julian fully embraces his hearing loss and is proud of his hearing aids. We allow him to design his own molds every few months at his audiology appointments. He always picks the most rad designs and colors which have earned him sweet and kind compliments from strangers wherever we go.

Julian is now old enough where he gets asked by other children what are in his ears and sometimes he just gets stares. We encourage Julian and Gianna to take those questions and stares as teaching opportunities to educate others on what hearing aids are for and what they do. Julian fully embraces his hearing loss and is proud of his hearing aids. We allow him to design his own molds every few months at his audiology appointments. He always picks the most rad designs and colors which have earned him sweet and kind compliments from strangers wherever we go.

Jill: From your Instagram, it looks like your son is really into music! How has this developed, and how has his hearing technology allowed him to follow this passion?

Jen: Julian has a deep love and attraction for music. He lives and breathes it. From a very young age, he seemed to just gravitate towards it. And his hearing technology plays a huge role in it. When he was three years old, he would wake up in the morning, come looking for his hearing aids and ask for Mumford and Sons to be played. He’s pretty advanced in his taste for music! At four years old, he asked for his own acoustic guitar. Now, as a spunky and sassy six year old, he owns every instrument under the sun. Guitar, drums, ukulele, harmonica, maracas, bongos, accordion, truly, the list goes on and on! However, his absolute favorite is the guitar. He belts out tunes while strumming his guitar wherever he goes. He’s also enrolled in Music Therapy and is learning how to navigate his world successfully while accomplishing individualized goals within a therapeutic relationship at his own pace.

His hearing technology gives him the tenacious confidence he needs and helps a hard of hearing boy in a hearing world. For Julian, music expresses what words can’t.

If it wasn’t for his hearing technology, like his Phonak Sky Q hearing aids and Phonak Roger Pen, Julian wouldn’t be able to hear the different tones, pitches and notes that he is trying to learn on the guitar. His hearing technology gives him the tenacious confidence he needs and helps a hard of hearing boy in a hearing world. For Julian, music expresses what words can’t. Without his hearing technology, Julian would be missing out on beautiful harmonies, extraordinary melodies, and mesmerizing beats that go into his ears and straight to his heart and soul.   

Jill: That’s wonderful! We’re so glad he’s able to follow his passions and utilize his hearing technology to do so! He’s such an inspiration. Do you have any advice for other parents who are going through similar situations? What do you hope other family’s gain from your story?

Jen: My hope for parents reading Julian’s journey is for them to understand how resilient and tenacious our children can be when given the right tools and unwavering support at home. It starts with us.

This pain gives way to new seeds for the most beautiful flowers you will ever see.

The pain we feel as parents after receiving a frightening and unexpected diagnosis about our children eventually heals and we learn to cope as it becomes our everyday “normal.” This pain gives way to new seeds for the most beautiful flowers you will ever see. We are a family of faith and we clung tightly to the truth that God made no mistakes when He made Julian. Our son is on a mission to be what he is destined to be. A future world changer in our eyes.

In the six short years of his life, Julian has been diagnosed with hearing loss, hydrocephalus, cerebral palsy, right-sided hemiplegia, epilepsy, sensory processing disorder… the medical terms and jargon go on and on. But all of these labels and all of these diagnosis will never define who he is. They don’t speak on all of the remarkable things he truly is. They do not make up all of the incredible inner pieces that string my son together. He simply radiates light.

With each passing day, Julian teaches me to stop trying to fit him and mold him into my world, instead, he shows me how to place myself in his world. And what a delightful, colorful, bold, and vivid world it is.

Jill: Thanks so much for sharing your family’s story, Jen! 

You can follow Jen and her family’s journey on Instagram @myorganizedchaos.

• Author Details

Author Details

Jill von Büren

Editor-in-chief of HearingLikeMe.com