Wendy Roback never had experience with hearing loss before her son Jaden was diagnosed with bilateral hearing loss, shortly after his second birthday.
Now, the 10-year-old is in 4th grade at a neighborhood public school and just heard the sound of wind for the first time.
Q: Can you tell us a little bit about your experience with hearing loss?
Wendy: Prior to Jaden’s hearing loss we had no experience with hearing loss. None of our friends or family had hearing loss. Jaden’s diagnosis really opened up a whole new world for us.
Now, I am the parent of an amazing child who happens to have bilateral hearing loss. Today I am an advocate for a child with hearing loss. Today I know many wonderful deaf and hard of hearing children and adults that I never would have crossed paths with had it not been for my child’s hearing loss.
Q: When did you find out that Jaden had hearing loss?
Wendy: Shortly after Jaden’s second birthday he was diagnosed with bilateral hearing loss following an ABR test. Jaden has a profound hearing loss on his right side and a moderate hearing loss on his left side. Jaden’s hearing loss was suspected when he was not making the linguistic milestones that a typical child makes.
” Jaden’s hearing loss was suspected when he was not making the linguistic milestones that a typical child makes.”
Between Jaden’s first and second birthday he had multiple “inconclusive” hearing evaluations; it wasn’t until Jaden had an ABR test that we were finally given a diagnosis. Subsequently Jaden had a CAT Scan performed and as a result it was discovered that Jaden has Mondini’s Malformation, which is the cause for Jaden’s hearing loss.
Q: Where did you turn to for resources and support?
Wendy: Immediately after diagnosis we were referred to a deaf infant teacher who began working with not just Jaden but our entire family. Our deaf infant teacher was an invaluable source of support and knowledge during a very overwhelming time. When Jaden turned 3 we enrolled him in the NYS School for the Deaf’s Little Listeners Program. This program focuses on developing a child’s listening and speech skills. The individuals that worked with Jaden at the NYS School for the Deaf would also become a huge resource and support team for our family. Actually, over the years many of these individuals have become lifelong friends. Lastly, we began the hunt to find an audiologist that would be a good match for Jaden. It took some time but we eventually found a wonderful pediatric audiologist. Over the years our audiologist has been a tremendous source of support and information, not only while at her office, but she has also been instrumental in making sure that Jaden has an optimal listening environment while at school. This has been important because just this school year Jaden made the transition from the NYS School for the Deaf to a mainstream school setting. Jaden is now enrolled in a regular 4th grade class at the public school in our hometown.
Q: How has your son’s confidence in school and his social life changed since getting his new Phonak hearing aids?
Wendy: The use of the Phonak Sky V-SP and Phonak CROS II is still very new to Jaden, but the positive changes are already apparent. I think this question is best summed up based on a conversation I recently had with Jaden’s teacher, in which she told me: “I love to watch him interact with the other kids now. He’s not having to constantly ask “What did you say?” What did I miss?” It’s amazing for me to just sit back and watch!”
“I love to watch him interact with the other kids now. He’s not having to constantly ask ‘What did you say? What did I miss?’ It’s amazing for me to just sit back and watch!”
Q: What has been the benefit of the CROS system? How did you learn about it? What makes it work for your son?
Wendy: I truly feel that a very big miracle was just given to my son in a very small package. The benefit of the CROS is that Jaden is now hearing environmental sounds that he’s never heard before. Jaden will be 10 next month and he just heard the sound of wind for the very first time. What an amazing gift! Jaden is now hearing many everyday sounds that we so often hear and take for granted.
“Jaden will be 10 next month and he just heard the sound of wind for the very first time. What an amazing gift!”
Additionally, Jaden is rediscovering sounds that he’s always heard because now he is hearing them in a new, different, clearer, better way. As I parent I cannot adequately describe the immense joy I get from being a witnessing to this. Jaden can now sit in class, have a classmate sitting on his right side whisper to him and he hears everything said to him without struggling. This has truly been life changing for Jaden.
(Although my whispers are not that quiet in this video, without the CROS Jaden never heard anything I whispered to him. Again I say, Life changing!)
I heard about the CROS a few years ago when I was searching on the internet for different hearing device options. I stumbled across a link that discussed the CROS. At the time, Jaden’s audiologist did not think it was a viable option for Jaden, but after the CROS II came out based on the updates and improvements that had been made to it she thought it would be a much more viable option for Jaden. We had to wait until January of this year to give the CROS a try because that was when Jaden was eligible to obtain new hearing aids through our health insurance policy.
Well, Jaden wants it! Jaden wants to hear and does not like missing things. Jaden does love to hear, but has no hearing on his right side. He is not a candidate for cochlear implants, so we thought that the CROS would be a viable option for him. The CROS provides Jaden a sense of normalcy and the ability to hear things coming in on his CROS side via the hearing aid in his left side.
Jaden is no longer constantly missing sounds that are coming in on the right side. As soon as Jaden wakes up his hearing aids are the first thing he puts on and they are the very last thing he takes off at night.
Q: What kind of advice would you give parents in a similar situation?
Wendy: Believe in your child and their abilities. Believe in your role as your child’s number one advocate. Ask questions and learn about the choices available to your family. Don’t be afraid to search until you find the perfect audiologist for your child.
“Believe in your child and their abilities. Believe in your role as your child’s number one advocate.”
Not every audiologist will be a good fit for you or your child, and having one that is a good fit for your family will be key in helping you to navigate your options and choices. I also think that it’s important for parents to know that hearing loss my be part of your child’s journey, but it certainly will not define who your child is.
Have goals for your child and set them high. Give them the opportunity to do so and your child can and will amaze you.
Wendy is also the author of a book “Pieces of the Puzzle: A Personal Journey of Raising a Child With Special Needs.” Connect with her on Facebook.