sound practice in action
Posted by Melanie Ribich on January 27, 2014 12:01 AM
The Click ABR and Tone Burst test results correlate with a severe to profound degree of hearing loss in each ear. Auditory steady state responses were also evaluated and correlated well with the tone burst results. These results indicate that Noah will be unable to detect speech when the speaker is talking at an average level in a quiet room. Noah should return for the fitting of super power hearing aids for both ears.
When we received the news that our infant son Noah had a profound hearing loss in both ears, we were left stunned.
There was no history of hearing loss in either of our families, and our other two children were born with normal hearing.
We drove home from that appointment with an audiogram that we did not know how interpret and a report we did not understand. We didn’t have the slightest idea of what would happen next.
Hours of online research later and we were confronted with the stark reality that Noah’s audiogram and report meant that our little boy was deaf.
Our hearts sank as the words repeated: Deaf. Deaf. Deaf. Deaf.
Noah couldn’t hear us singing while we rocked him to sleep like his brother and sister could. We feared that our child would never enjoy music, never have friends to chat with, never talk on the phone and would never hear the rain on our roof. He would never giggle at the dinner table with his twin brother and older sister. He would always be different.
We cried and cried and we began to grieve the loss of our dream of having two perfect baby boys. We were heartbroken that day, because we knew little about hearing aids or cochlear implants. We simply didn’t know what was possible for children who are born deaf and hard of hearing.
We chose Auditory-Verbal Therapy when Noah was just four months of age. Our desired long-term goal was for Noah to hear, listen, talk and attend our local school with his siblings. We had no idea if this would be possible with his level of hearing loss but we were determined to try to have faith this approach would be the best way for our family to get there.
Every Friday morning our auditory-verbal therapist came to our home. Noah’s huge hearing aids squealed. They fell off and often ended up in his mouth as chew toys. My baby would sit on my lap while we tried to get him to respond to any kind of sound, but he didn’t. It became very apparent that I was the only one benefitting from the therapy sessions.
During the week, I spoke, sang, made Learning to Listen (LTL) sounds constantly while I fetched bottles and fed him. I talked to him incessantly while I changed his diapers and clothing. I was desperate for Noah to hear something, to recognize my voice, his name, a song—anything!
But he never did, and I would burst into tears and sob.
We then pursued cochlear implants for Noah because his hearing aids were not giving him enough access to sounds to learn to listen and speak. As soon as Noah’s cochlear implants gave him auditory access, I began to see him respond to sounds and I felt encouraged!
As I learned more in our therapy sessions, I became empowered. The more skills I learned, the less heartbroken I felt.
Our auditory-verbal therapist provided guidance, coaching, correction through suggestions, and she listened, empathized and never wavered in her commitment to our entire family.
With the weekly therapy sessions, cochlear implants, and his audiologist, slowly but surely Noah’s words came. Every sound our boy uttered was a miracle at first. I kept a log of every word until I couldn’t keep up anymore.
He began speaking in sentences, then paragraphs, and stories. He even began to sing.
Noah is now the most animated storyteller I have ever met.
The list of things that we had feared that Noah would never do were slowly dissipating.
A parent of a newly diagnosed child once asked me when I knew it would be “ok” and I guess that moment came a few summers ago.
Noah and I went outside to water the flowers and heard bugs humming in the trees; the most incredible sound that you can only hear in the tail end of summertime. Noah immediately exclaimed: “Mommy, I hear so many bugs!”
It stopped me in my tracks.
His eyes were wide and his smile was enormous. It was the first time he had ever noticed this chorus of nature and he was ecstatic.
Those bugs were performing a symphony in my backyard and my little boy who is profoundly deaf heard them.
I suddenly realized that this moment mattered to me just as much as any word he ever said. At this moment, I knew our time of grief was over.
Noah may not have typical hearing but absolutely everything else about him is typical in every way.
Listening has been integrated into his personality.
Noah is now six years old and excels at mainstream school with his siblings, reads above his grade level, and is very eager to learn.
He is primed for anything life has in store for him. The sadness of those early days is gone and we are left with only the joy that comes from being around our exuberant little boy.
With six years of hindsight, looking back on the report that gave us the news that our son was profoundly deaf, I wish it had said:
“Noah is deaf. It is nothing you did—it just happened.
He needs hearing aids now. He may need cochlear implants later.
We will help you learn about both. Go home and drink a bottle of wine and cry.
Then find a great therapist who will teach you skills to help your son
learn to listen and speak. Even though you feel devastated and helpless
right now, eventually, it will all be ok.”
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KAREN MACIVER LUX