Learning to listen: A journey with deafness

After months of doctors appointments, Bosyn is diagnosed with progressive deafness and must learn ASL to communicate.

Before her son’s first birthday, Xi began to worry that something was wrong. “Bosyn was only around a year old, but I could tell he was very distracted — he wouldn’t look up when a phone rang or when a character in a movie yelled,” recalls Xi. “He would respond more to bright lights or colors than to sounds.”

The nine months following his second birthday were filled with appointments, inconclusive hearing tests and pediatricians dismissing Xi’s worries because she was a first-time parent.

But Xi couldn’t shake the feeling that something was wrong.

The family decided to travel from their hometown in upstate New York to Boston Children’s Hospital to seek a second opinion from the Deaf and Hard of Hearing Program (DHHP) in the Department of Otolaryngology.

There, they met a team of professionals with experience providing diagnosis and guidance for children who are deaf or hard of hearing, and their parents. Otolaryngologist Dr. Margaret Kenna confirmed Xi’s maternal instinct: Bosyn had a type of deafness called bilateral sensorineural hearing loss, which was likely progressive, and caused by anatomical abnormalities of the inner ear structures.

Xi’s heart filled with a combination of relief, frustration and fear. She finally had a concrete diagnosis, but just about everything else was still an overwhelming unknown. How extensive was Bosyn’s hearing loss? Where would they even start with treatment? Where would he go to school?

Moving forward: Living with deafness

Many of Xi’s questions were answered when she met with speech-language pathologist, Dr. Jennifer Johnston. “We talked for hours,” remembers Xi. “She discussed the opportunities we had, the challenges we should expect and the adjustments we were going to have to make as a family.”

Bosyn and his family moved to Boston to receive treatment from the Deaf and Hard of Hearing Program.

Despite the informative and comforting talk, there was one decision that loomed over Xi’s head: Bosyn’s education. Wanting to give her child the most normal life possible, she wanted anything that would get her son’s language skills caught up to his peers as quickly as possible. Xi began to consider a cochlear implant.

Before receiving his cochlear implant, which would help him hear, Johnston began working with Xi and Bosyn weekly to provide him with a language that he could see, American Sign Language (ASL).

She explained that language ability can affect confidence, self-esteem and mental health in a child, and pushing Bosyn to speak before he could more clearly hear spoken language was not the best way to support his language acquisition. She recommended Xi look at schools with a strong American Sign Language program, as learning ASL would lay the foundation Bosyn needed to develop his spoken language in the future.

Bosyn is learning to speak and I am learning to listen. ~ Xi, Bosyn’s mom

“At first, I was worried,” says Xi. “I couldn’t wrap my head around my son having to learn two languages and work harder than everyone else to communicate.” Then, after the first few weeks of therapy, she saw that Bosyn was beginning to understand concepts through signing. He also was learning to say words that he had learned first in sign language.

Johnston reassured Xi that her son could achieve anything he set his mind to. Like Xi, who is bilingual in Chinese and English, having an opportunity to learn ASL in early childhood could support Bosyn’s learning of another language, spoken English, later on. The same way Xi mastered both languages over time, Bosyn could grow up to use both ASL and English.

Johnston and the DHHP had instilled a sense of trust in Xi, and, although it wasn’t an easy decision, she decided to follow their advice. “Today I could not be more thankful to Dr. Johnston,” says Xi. “She stood up for my son when I almost let my opinion get in the way of his treatment. It’s been as much of a learning experience for me as it has been for him. Bosyn is learning how to speak and I am learning to listen.”

Setting the bar high for Bosyn

We don’t subscribe to a lower bar for deaf children. We want all children to enjoy the rewards of achievements — as high as they can attain. ~ Dr. Terrell Clark

Helping families navigate growth opportunities for their children is an important part of the DHHP’s work. But one of the hardest and most persistent challenges is the diminished set of expectations sometimes placed on deaf and hard-of-hearing children.

“Hearing loss need not reduce a child’s potential for learning,” explains DHHP director Dr. Terrell Clark. “We don’t subscribe to a lower bar for deaf children. We want all children to enjoy the rewards of achievements — as high as they can attain.”

Today, 6-year-old Bosyn is in first grade and enrolled in the specialty educational program sponsored by READS Collaborative. He excels at school and enjoys soccer, baseball and karate. He is even learning to do tricks in his roller skates. Bosyn now wears a cochlear implant and a hearing aide, and has picked up sign language easily. He continues improving his speech and language abilities every day, and is even starting to learn some Chinese words.

“It’s not easy, there are so many new challenges every day,” says Xi, “but we face them together.”

Learn more about Boston Children’s Deaf and Hard of Hearing Program (DHHP).