One Family’s Journey
Raising a Son with Microtia Atresia
By Nick Patten, WA Hands & Voices
Louis joined our family shortly after his second birthday in the Hebei province of China in the spring of 2015. While we knew before we met him that he had been born with bilateral Microtia Atresia, we were unaware the severity of his hearing loss. We were told that he was speaking at a level similar to other children his age.
When my wife and I first met our son and realized that he didn’t speak, we felt frustrated. We regretted not learning sign language during the long months waiting and preparing to bring him home. We quickly learned some signs via the Internet while we were in China, and Louis devised sounds and gestures to communicate his immediate needs, using “home signs” for more, food, potty, water, and others. Together, we bonded with him while fostering his interest in communication, attempting to make his transition home as smooth as possible. While we learned more and more about his hearing loss and equipped ourselves to address his needs, the bonding time we shared as a family could not have gone better. He is naturally a gregarious and gentle soul who interacts and shares with everyone around him.
Learning about Microtia
Like most people, my wife and I were previously unfamiliar with this condition where one or both pinna (the external part of the ear) are underdeveloped or completely missing. Microtia can be unilateral (one ear only) or bilateral (affecting both sides) and occurs in one in 8-10,000 births. The related hearing loss is conductive, affecting the middle ear anatomy. Bone conduction hearing aids are the typical technology used for Microtia.
Once home, Louis had an audiological examination at Seattle Children’s Hospital, and we began to have a better understanding of his bilateral, moderate to moderately-severe hearing loss. Through a grant-funded program administered by Children’s, Louis was fitted with a temporary aid. His eyes widened in reaction to his first experience of sound. We found that he was much more tired for the next couple of weeks as he learned to navigate this sometimes-overwhelming new sense. Audiologists asked us to use the technology during all waking hours except for bathing, and Louis did a very good job of wearing the headband regularly. The biggest challenge: getting used to the inevitable feedback when something came too close to the microphone. We learned to allow for short breaks for wrestling and cuddling.
About two months later, Louis was fitted with his own set of bone conduction sound processors, called BAHAs. While the temporary aids might sound monophonic, his BAHAs were full surround-sound and programmed for his specific hearing in each ear. With the ability to discriminate sounds more easily, he began using his voice to get attention and began articulating different sounds. From the start, he recognized his equipment as a powerful tool for hearing and prefers to wear his BAHAs nearly all of the time, and continued to grow his sign vocabulary at the same time.
At some point, we may go forward with recommendations for surgical placement of titanium implants and potentially ear prosthetics (should he choose). For now, continuing to develop his language is the most important goal.
Finding Our Way To Language
Adjusting to being new parents of an active two-year-old often felt like being thrown into the deep end of a swimming pool. We are still just beginning to learn about the different modes of communication available and the nuances of each. Admittedly, we were overwhelmed at first by the wide variety of resources available to children like Louis in the Seattle area. In those early days, I remember someone asking us how we wanted to communicate with Louis. We immediately responded that we wanted to use spoken English, as if there could be any other answer. We were unfamiliar with signing, outside of Joanna’s knowledge of the manual alphabet she learned in grade school.
Our work with two different 0-3 programs in the Seattle area introduced us to educators and other families who have been extremely supportive of our goals. After some exploration, we decided focus on English, learning strategies for listening and speech along with sign. That is, we simultaneously speak and sign grammatically correct English, or Signing Exact English (S.E.E.), which seemed to be the quickest way for Joanna and I to learn to add visual language to our life with Louis.
We were first exposed to S.E.E. through the 0-3 program Family Conversations. Every other week a communication specialist would come to our home, and we attended regular Family Conversations playgroups with other families of deaf children and quickly established friends. We would later come to learn about the Northwest School for Deaf and Hard-Of-Hearing Children (NWSDHH) where speech and sign are used simultaneously. Before Louis turned three, we began to attend monthly play dates at NSWDHH, giving us an opportunity to meet other families and get to know the school staff as well as learn about the educational benefits of S.E.E. We eventually decided that the preschool would be a good match for our son’s needs.
While it feels a bit selfish choosing a communication mode that most suits the parents’ learning objectives and current abilities, we recognize that Louis cannot make these decisions yet for himself. We want him to be able to connect with and have community with whomever he encounters. He definitely seems drawn to signing and speaking now, but we will support any decision he makes for his future.
We continue to navigate the waters of deaf education with the support of dedicated professionals. They allow us time for due diligence and independence as we decide how to meet our family’s continuing communication goals. We are proud of our happy and social little boy who loves playing with other children, is self-reliant, and is the most generous person we have ever met. Louis loves his “cat brother” Doug and enjoys swimming, playing at the playground, reading books, listening to music and dancing (he has developed some pretty sweet moves if we do say so ourselves!) We believe Louis to be an observant and intelligent child and expect him to perform academically at or above his age level in school. We hope he develops a deep connection to the Deaf community and also be able to effectively interact with hearing peers in the big world around him. If we can equip Louis with access to an appropriate education and continue to provide him with loving support, we’re fairly sure he will someday rule the world (in a peaceful and egalitarian fashion, of course)
Our advice to other families in a similar situation is to work together with your child’s team of audiologists, speech pathologists, outreach coordinators, teachers, administrators, IEP team members, and any other advocates willing to help your family. Take advantage of any opportunity for social or educational meetings geared towards families with children who are deaf. While the process is always ongoing, we hope other families will be as fortunate as we have in finding a welcoming and vibrant community and we hope to meet you there!
Editor’s note: Patten recently joined the board of the Washington Chapter.