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Growing up deaf: Parents of children with hearing loss faced with multiple options

From the Deaf in Utah series
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The following is the fourth article in the six-part series Deaf in Utah. The next article will run on Feb. 23.

Stephanie Morgan wasn’t always proud of who she was. After she started losing her hearing, she’d wear her hair over her hearing aids and would make up answers when playing telephone because she couldn’t hear what other kids were whispering in her ear.

“Eventually, people caught on to me and I was very embarrassed,” said Morgan, who is deaf.

About two to three of every 1,000 children born in the United States have detectable hearing loss, according to the National Institute on Deafness and Other Communication Disorders. About 15% of American adults report trouble hearing, with hearing loss becoming more common later in life.

Morgan’s confidence grew after she took an American Sign Language class in high school and learned about how the deaf community doesn’t see hearing loss as an impairment, but as an identity.

Now, as the mother of a child with hearing loss and the director of the parent infant program for deaf and hard of hearing children at the Utah Schools for the Deaf and Blind, she wants to assure her children don’t have the same experience that she had growing up.

“I want them to feel confident in who they are,” she said.

Helping parents navigate

The parent infant program for deaf and hard of hearing children at the Utah Schools for the Deaf and Blind visits families of children who are up to 3 years old in their homes.

“We go to the home because the child learns best when they know who is with them in a safe environment,” Morgan said.

The programs has 16 providers across Utah who will see a child up to three times a month. It serves about 500 Utah children a year.

The providers help hearing parents identify what they want for their child, which can include learning ASL, speaking orally or getting a hearing aid or cochlear implant.

“We educate them so they feel comfortable with their decision,” Morgan said.

Parents will ask what will happen as their child ages, if their child will be able to drive or if deaf children can learn to read.

Some hearing parents of deaf children will learn sign language, and others won’t. Morgan said some parents will be very interested in learning ASL, while others will see that their child is doing well with speaking orally and will decide not to pursue sign language.

“It depends on the parent, and their fluency will range depending on how much they want,” Morgan said.

The program includes deaf mentors who can help families learn ASL. It will also invite families to events where they can meet deaf adults.

“They are a great role model for families and the kids to meet to see what deafness looks like when you are older,” Morgan said.

A lot of the parents, she said, have never met a deaf person before.

In their first meeting with parents, providers will learn about the families, listen to parents, hear concerns and understand that hearing parents can be grieving.

“A lot of parents, they just want their child to be OK, so they are scared,” Morgan said.

The providers will help parents find ways other than speaking to get their child’s attention, like touching their shoulder, flickering lights on and off or stomping on a wooden floor so their child can feel the vibrations.

Before the parent infant program, Morgan said that some parents would wait until their child entered kindergarten and a school brought up their hearing loss before they would start seeking help on how to navigate it. Morgan said early actions are key because a child’s brain learns language — whether ASL, oral or both — most easily before the age of 5.

“If you don’t give the child language before then, that window closes,” Morgan said.

A familiar journey

Morgan began to lose her hearing between the ages of 3 and 5. There weren’t many resources for her and her family available at the time. Morgan’s mother went to the library to find books on ASL, and Morgan took a community sign language class in sixth grade. Over time, she’s lost more and more of her hearing.

Suspecting that her hearing loss was genetic, Morgan and her hearing husband have been watchful as their three children have been born. They thought that their oldest, John, didn’t have hearing loss, until he began complaining that he couldn’t hear at school.

Of their three children, John is hard of hearing, another child is hearing, and the Morgans are still determining the hearing level of their youngest, who has experienced blocked eustachian tubes.

John chose to attend the Utah Schools for the Deaf and Blind. At home, the entire family communicates orally, but also signs to each other.

“We were more aware of the possibility that he may not hear us if we just shout in the house, so that was a little adjustment,” Morgan said.

John, who is 12, was brought on to act in the short film “The Silent Dinner,” which will be shown at 3:30 p.m. Feb. 28 at the Scera Center for the Performing Arts in Orem. In the film, a teenage girl visits her extended family, who does not know ASL. She is left out of conversations and gets brushed off when she signs to her mother asking what people are laughing about.

It’s a situation that’s common for those who are deaf and hard of hearing.

“It is hard to see kids get left out, regardless of the situation,” Morgan said.

John remembers sitting at the table at his old school with hearing friends, who’d laugh about something he couldn’t hear. When he asked what was funny, they told him to wait — and then kept talking.

“They kept doing that over and over,” John said. “They kept on leaving me out.”

Morgan’s extended family doesn’t know sign language, which can make Thanksgiving dinners frustrating.

“I am left out of family conversations like that,” she said.

Morgan got a cochlear implant a year ago, which she saw as the final thing she could do to be involved with her family. She’s previously undergone speech therapy, gotten hearing aids and learned to lip read before she chose surgery.

“I became really angry about it,” she said.

Then, her mother visited and said she’d begin taking sign language classes. They talked, and now do a sign language class via video chat every Saturday. Her family is trying, but Morgan wishes that there had been more resources for them when she was growing up.

She’s faced a lot of misinformation from the hearing community, like day care providers who have warned her against teaching her children sign language because they falsely think it’ll interfere with the children’s ability to learn speech.

“It is interesting, because their background is not in the education field, but they still feel qualified to give me that advice,” Morgan said.

John is glad that he was born to a deaf mother.

“Kids who are deaf, if they have deaf parents, those kids are in luck because the deaf parents have gone through everything and know what to do with their child,” John said.

He said his mother will nicely correct his ASL if he signs wrong, and she encourages him to practice it more.

They’ve talked about how the world would be different if deaf people were the majority and hearing people were seen as the ones with a disability. They had fun with it, joking about how hearing people couldn’t focus because they’re too distracted by the vibrations around them.

In their home, the family tries to balance the hearing and the deaf worlds. They’ll attend church services for the deaf, and deaf activities and events where there’s advocating for the deaf, all along with hearing events, too.

John said he wants hearing adults to understand that children with hearing loss are no different from hearing ones.

“They can’t hear, that’s it,” John said. “They are just the same. There are no problems with them. They’re not sick, they are just deaf.”

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