Emily didn’t intend on writing a children’s book about hearing aids. Her focus was on settling into a routine of ENT, audiology, speech therapy and family service facilitator appointments. A routine that many parents of hard of hearing children are familiar with.
This was far from how her and her husband imagined spending their days with their six month old baby, but this new life opened up her eyes to a new world and additional purpose as a mother, leading to Max and His Hearing Aids.
“Max and His Hearing Aids grew out of a desire to give children and their families the gift of knowing that hearing aids are a lasting and spectacular addition on the hearing journey,” says Emily.
The full story behind Max and His Hearing Aids starts when Max Mikoski was born six weeks earlier than expected weighing just over three pounds. He spent the first twenty-eight days of his life as a “feeder and a grower” in the hospital’s Neonatal Intensive Care Unit (NICU).
“Twice a day trips back and forth to see our ‘Little Peanut’ were tiring, but so worth it. We eagerly anticipated the day Max would be strong enough to come home with Mommy, Daddy and Sissy,” Emily says.
Max and his family live in Washington State, which does not have a law mandating newborn hearing screenings. Luckily, their hospital follows the best practice guidelines that newborns should have their hearing screened by their first month. Max had the test; he failed it. Right after, he was referred for a rescreening, which he failed again.
Max failing both hearing tests marked the beginning of a fascinating and inspiring journey for his entire family. At three months of age, Max experienced an auditory brainstem response test (ABR). The ABR measures the hearing nerve’s response to sound. The test results determined that Max had a mild to moderate hearing loss.
“We were surprised to learn through the American Academy of Pediatrics that hearing loss is a common birth defect. Three in 1,000 infants have moderate to severe hearing loss,” Emily says. “We also learned hearing loss is more common in infants who spend an extended period of time in a NICU.”
All of a sudden Max and his family found themselves facing hearing loss, which was new to them.
“To say at this point we were scared and just a little overwhelmed, would be an understatement,” Emily explained.
“To say at this point we were scared and just a little overwhelmed, would be an understatement,”
They had never known a child with hearing loss or that wore hearing aids. They were concerned about not only about the present, but also about Max’s future. Questions ran through their heads such as, ‘how would his hearing loss affect his learning and social adjustment?’. The questions continued to appear, sparking a quest for answers. Max’s parents wanted to be sure they put in all their effort to become informed parents of a hard of hearing child.
“Though digging deep for information and available resources, and sorting through the myriad of acronyms and agencies could be daunting at times, the payoff was priceless,” Emily says.
They worked with enormously concerned, skilled professionals and helpful, experienced parents to learn about the options for their son. By four months of age, Max was sporting his first pair of Phonak hearing aids.
“The first day with the aids was extraordinary,” she says. “The look on Max’s face when he pulled the string on his Elmo toy and heard that strange creature’s voice say, ‘Elmo loves you,’ is a look I will forever hold in my heart.”
“The first day with the aids was extraordinary,”
Emily was inspired by the new life she was living as she learned more about her son’s hearing loss each day.
“The more informed I became about Max’s hearing issues, the more empowered I became. I had a new sense of responsibility, discovery, and accountability that moved beyond that of my role as mother. Connecting and communicating with other families who were processing the same or similar issues with their children, gave me strength and a camaraderie I would never have imagined,” says Emily.
Feeling empowered to discover more resources for Max’s hearing loss, Emily went on a hunt for a book to add to their growing collection. Reading to their children is an integral part of their day, so this was important to Emily. She searched bookstores and online for an age appropriate book about a child who wears hearing aids. She wanted a book that she could read to Max and his older sister about the wonders of wearing hearing aids and all the sounds of the world ready for Max to hear.
“Above all, I wanted a book about a child with hearing aids that was positive and affirming,” she says.
With no success at finding a book, Emily took matters into her own hands. She wrote a book to read to Max and his older sister.
“There is certainly nothing special about me. I am a mother with a hard of hearing child, an extra bonus I never would have dreamed. Because of Max I listen to the world differently. My desire has always been to understand Max’s hearing world, and by doing so I never take hearing for granted. He fuels my curiosity, wonder, and pure enjoyment of the life we live and hear. Max is my inspiration,” says Emily.
“There is certainly nothing special about me. I am a mother with a hard of hearing child, an extra bonus I never would have dreamed. Because of Max I listen to the world differently.”
Emily’s journey led her to instill the philosophy that Max is his own best advocate. Providing Max with the knowledge that there is nothing he cannot do, is her best gift to her son. She believes that it is her responsibility to educate and inform her children by filling their backpacks with the right emotional gear to handle any situation that might present itself.