One Family’s Journey:
The Sound Conductor
By Laryssa Payne, NE Hands & Voices
Editor’s Note: This is Part Two of the Conductive Loss Journey Story. Read Part 1
My son, Jasper, two and a half, has a conductive hearing loss. He has recently been around some kids through a variety of social events, and I have high hopes of him making a real friend. I have been waiting and trusting that as he grew, that he would be confident to initiate play with his peers even while being an introvert. His short physical stature, due to hopefully innocuous genes, makes him seem so small next to others. I love watching him watch people, other children and his peers. His hazel-green eyes captivate me and absorb my thoughts as he stares at others. I always wonder what he perceives. Does he know he is different in how he hears and connects with others? Does he want to play?
Some moments start with a smile as he watches kids in the doctors’ waiting area. In other moments, he walks up and looks up at a group of tall teens chattering while at a public event. He is near but unnoticed by the teens and sometimes by the smaller children at play. He hovers, as if about to dive in, but waits for a signal or to be noticed. When he is noticed, (when a waiter finally catches his eye,) his face softens into a “thank you for noticing my cuteness, but please make the first move” glance. Like his mother’s, his eyes love to talk a lot. Then, if the server is female, the flirt look sweeps across his face transforming our son into the biggest ham Broadway has ever seen! He swaggers and dances a bit and we clap our hands. He creates an adoring fan base among our friends, our relatives, and a few random strangers. Most of these fans do not sign. They love him but are not his peers.
I would love to share how he interacts with his friends, but he hasn’t connected to any children his age yet. He has no peers, no one buddy for a playmate, hearing or not. Instead, he moves in and out of crowds of kids without even a hand to hold. He is friendly and not standoffish. He plays parallel to them and I ache for others to know his sense of humor, sensitivity and intelligence. Instead I see Jasper following his peers like a shadow. Is the barrier made partly of the many words he doesn’t know how to sign or is unable to verbalize? So he stands at the station platform watching a train of laughing kids roll on past him; leaving him alone and watching from a distance.
As a parent hungry for information, I long to meet and talk to others who have been through this or for professionals to advise our family on making friends. I know many parents share my particular fear for my son, my wonderful delightful son; that he will not have a friend. I hope for him to have a peer and friend who will take the time to love him so much that his buddy will learn sign just to communicate with Jasper.
In my search for answers, I sought out an audiologist from Boys Town National Research Hospital. The following is our interchange.
How many people are going through what I am experiencing? Her answer, based on information obtained by the Center for Disease Control (CDC) and early detection and hearing intervention (EDHI), indicates that of approximately four million births in 2006 that four thousand babies had hearing loss in general and about 10% of those had conductive loss. This means that about four hundred babies in 2006 were diagnosed with a conductive hearing loss.
My next question was: What can Boys Town National Research Hospital do for our child and his conductive hearing loss? Their facility, in her words, “. . . provides hearing tests, information about hearing loss, referrals to early intervention services, hearing aid evaluations, and hearing aid fittings. In addition, there are many other health care providers that will become involved in the care of a child with permanent conductive hearing loss. ENT (ear, nose, and throat) physicians are involved in the diagnosis and possible treatment. They can help to figure out the cause of the hearing loss. An ophthalmological evaluation is necessary to rule out any vision problems. Syndromes can be associated with hearing and vision loss. A geneticist can also help to determine if the hearing loss is associated with any other health impairments. They may also help determine the cause of the permanent conductive hearing loss and the probability of hearing impairment for other or future family members.”
The Problem of Amplification
One of the challenges specific to those with a conductive loss is that while a hearing aid might be needed and useful in activating the inner ear, amplification isn’t always straightforward. As she puts it, “hearing aids can be used by children with permanent conductive hearing loss. A traditional hearing aid might not stay positioned on the child’s outer ear, if a child is born with a small outer ear, without an outer ear, or without an ear canal. Nonetheless, there are still ways to get sound to the organ of hearing (cochlea).”
This is such a challenge especially since every diagnosis of conductive loss is a little bit different. The part(s) of a child’s outer or middle ear affected by the conductive hearing loss can be so varied and there is much to consider. For Jasper, we have been assuming that the too narrow size of his ear canal (outer ear) is the only reason for his conductive loss. His narrow canals are still the original cause but now it turns out that we have to check and worry about the three areas of that middle ear and hope and pray that nothing else turns up or gets worse. A conductive loss means that the auditory nerve and the cochlea function well, but the variety that conductive losses come in creates fear in a mother’s heart about the unknown. Will he be a candidate for ear reconstruction surgery? Will researchers find new technology specific to conductive loss and available to young children? Will his ears on their own grow enough to perhaps improve in function? All these parental worries seem greater in scope than the Grand Canyon. I am responsible not just for the medical care of his precious body but now I hear the whispers of fear that I have set him on a path he hasn’t chosen. Yet his ability to connect to the world was placed in my hands.
The description from the audiologist echoes in my mind as I consider all the possibilities, “A conductive hearing loss occurs when sound waves cannot get to the cochlea because of a problem with the ear canal, the ear drum, or the middle ear. We can provide sound to children by creating sound waves that vibrate the fluid in the cochlea. A bone conduction hearing aid does just that.”
So there are a few options. “The fluid in the cochlea is moved by the bone conduction hearing aid or bone anchored hearing aid (BAHA) rather than by sound waves traveling through the ear canal. The information is then sent to the brain along the auditory nerve. Bone conduction hearing aids can be worn on a headband or be surgically implanted. Surgical intervention is not an option until approximately five or six years of age, once the child has sufficiently grown. When children are born without an outer ear, surgical reconstruction is available. This process may begin in childhood, but is not finalized until a child is fully grown to allow for proper placement. At later ages, ear canal reconstruction may be an option. Sometimes traditional hearing aids can be used for conductive hearing loss. The type of hearing aid depends on the cause of the conductive hearing loss. In some cases traditional hearing aids are best and in some cases a BAHA is best. These decisions are made on a case by case basis and depend on the cause. For traditional hearing aids, bone conduction hearing aids, BAHA amplification, and cochlear implants, FM system use is recommended.”
What does my son actually hear? “Cases of purely conductive hearing loss may sound to a person with normal hearing like they are wearing ear plugs. Sound is muffled, but not distorted because there is no damage to the cochlea or auditory nerve. A milder conductive hearing loss might sound as if you are wearing earplugs or holding your fingers in your ears. A more severe conductive hearing loss would sound more muffled, as if you were underwater.” A picture sprang to mind: I remembered a couple of lazy times in the pool, looking up, seeing but not hearing completely. It is actually a beautiful moment, there is a kind of peace in the quiet as you swim, head down, completely submerged. It is a different world, but the water reflects, shadows and light play and dance before your eyes as you trust and float, until your head breaks the surface barrier and your ears vibrate as noisy kids play Marco Polo. Is this what my son hears? This world is not as sad as I had imagined. Still, if my son is to connect to others, at least those in the world who do not sign, at some point the barrier must be breached and his head must come up out of the water.
I have more questions. If the BAHA is digital but his hearing aid is analog – which is better? Even if he is a good future candidate for a BAHA, what about the risk of infection? How can I predict that this is really the best decision? My heart feels full of how much I want to be his parent but not live his life for him. All I can think about some days is whether or not I am being the kind of parent I need to be for Jasper.
The Role of Mother
So, my son in his creative and quirky way opened my heart and led me to the truth of what kind of parent he needs. We had recently taken and survived a marathon car trip with a two and a half year old toddler, Jasper, and a nearly one year old, Elani, from Nebraska to North Carolina and back again to show the ocean to our children. We were relaxing back at home in our living room. I had pulled out a simple plastic kid’s stand-alone slide for the living room. He had not played with this slide before and so attacked it with fervor, chattering and signing in his own way as he slid down. I mentioned casually to my husband that it would make a good house if a bed sheet were tossed over it. I had never modeled using sheets to build a bed nor had he played with other children who had made a house of sheets. After overhearing my comment he ran to a bed sheet in the living room and started vocalizing “house” over and over excitedly. He directed us, his common workers, like any good foreman, in throwing the sheet this way or that until the house reached his vision of perfection. Our son was quite pleased with himself and ran in and under and through it, all the while verbalizing “house” repeatedly. Then he signed “piggy” and to our delight proceeded to act out parts of The Three Little Wolves and the Big Bad Pig story he has asked us to read to him over and over.
Jasper’s ability to recognize, create, and act out this story using the house as a prop after only just creating the house drew tears to my eyes. This is because finally his light was shining through his hearing loss. Yet my tears of joy were also about expressing my own growth as a mom. For when that moment happened, I wasn’t thinking about being a teacher to him, about how to help him connect, about his future. I was just a mom who loves her son. Period. I called my husband over to my side, shared my feelings, cried into his tender arms and we rejoiced in our son. Our son has taught me that if I relax and enjoy him, I enjoy the fact that I am entrusted with him instead of fearing my mistakes in parenting him. Best of all I can trust Jasper to show me what he needs. And I finally found what it means to be a parent. To be empowered. Not to have all the answers, for I will always have questions and a drive to find answers, but to be empowered to be who I am - his mom. Empowered to love him, to make mistakes, to look for how to help and to do my best for this son who is so much more than his audiogram. ~