Experience Journal: Growing up with hearing loss

baseball_shutterstock v2__109556990In the U.S., roughly two to three out of every 1,000 children are born deaf or hard of hearing. This may launch families into unfamiliar territory as more than 90 percent of parents of deaf and hard of hearing children are not deaf or hard of hearing.

Some parents may have never met a deaf or hard of hearing person. As they begin the journey of raising their child, they may feel unfamiliar with the effects of hearing loss on acquiring language, communicating effectively with others, achieving academically and developing positive self images. There are a number of informed perspectives, resources, interventions, medical treatments and assistive technologies that can help children with hearing loss lead successful and fulfilling lives.

exprience-journal-logo-5

The Hearing Loss Experience Journal, created by the Boston Children’s Hospital Deaf and Hard of Hearing Program and the Department of Psychiatry, includes stories and experiences from children, young adults and families and represents the collective wisdom of families living with pediatric hearing loss. Here are some of their stories about growing up with hearing loss, using hearing aids and cochlear implants and more, in their own words.

On using hearing assistive technologies, such as hearing aids and cochlear implants, as well as sign language

Chris, 10

“What are those green things on your ear?” I replied, “When I was born I was sick, and my ears got hurt, so I need to wear these to hear better.” Usually the kindergartners ask me that because anyone else in my grade already knows the answer.

Evan, 11

I’m a catcher, and that’s really easy because you’re the one giving the signs to the pitcher, so you get to know all that. You get to see the whole field so you don’t have to worry about knowing where everyone is. I think the best advice is to tell the coach that you’re deaf; that you would like to have some signs and stuff. I think that’s an advantage when you’re playing against other teams because they have no idea what you’re gonna do!

Nadir, 13

I like going swimming. When we go swimming, we take our cochlear implants off because if we go swimming with them on we would damage everything! During those times, we read lips. Sometimes we can’t hear, so they turn off lights to let us know it’s time to go.

On growing up with hearing loss

Melanie, 23, a young adult with acquired hearing loss

As soon as I met other deaf kids and fostered a friendship with them, I realized that I wasn’t so different! If there’s one piece of advice I’d impart it is that your disability is most likely not going to go away. You cannot keep hating yourself for being this way. Instead, do whatever you can do to embrace it, celebrate it and learn to love it as a special gift. People with a disability are given a gift of looking at the world in a different way.

Mark, an audiologist who was born deaf

I was the only one in my grade with a significant hearing loss. So it wasn’t until I met [other deaf kids], that I was like, “You know, I can speak up for myself too if they can do it.” As soon as I met other deaf kids and fostered a friendship with them, I realized that I wasn’t so different! And it’s OK to stick up for myself and to get what I need, because I am not alone.

Parent perspectives on early intervention, assistive technologies and support systems

A parent

I believe we started sign class the day after he was diagnosed. We got him into speech and language therapy right away. When he got his implant, all those services continued until he transitioned into public school at 3. He showed great language growth right away! He was just like a sponge with the sign. I mean right away he could communicate his basic needs, what he wanted.

hearing aid shutterstock_302056025A parent

One of the things I want to say is we had a lot of help. We had early intervention services, and he started going to a specialty program. We did learn a little sign, so when he was a baby we started signing with him, and I think that helped a lot. It was his first language, and now he’s speaking three languages: Spanish, English and Sign Language. He goes to preschool where he signs and speaks English, and at home we only speak Spanish with him. We want him to learn all three languages, and we are so proud of him. … He’s a very happy boy.

A parent

Upon leaving an audiological appointment during which her daughter’s cochlear implant was programmed | We were walking out of the parking lot and she stopped. She said, “What’s that?” I replied, “What?” She pointed up and said, “That?” I stopped with her, and I was listening with her. She heard the birds. She repeated, “That!!” I said, “That’s the birds, Cristina.” She replied, “That’s the birds??” She was hearing the birds for the first time with her cochlear implant, and that was pretty neat. That’s when I start thinking that sometimes we take things for granted. It’s interesting because one time she said to me, “You don’t know what it feels like to be deaf,” and she’s right, I don’t know. But I do know what it feels like to be a mom of a deaf child.

A parent

Having a support group is very important. We just started a parent support group back in June for parents of deaf kids in our city, and that’s worked out really well because sometimes you think, “I’m the only one who has a deaf child.” But now that I’ve done this group and have met so many parents and so many kids who are deaf I feel more supported. It’s very important to be able to meet other parents, and share our experiences with each other.

Check out our new website, and read more about living with hearing loss and other health conditions at the Experience Journals.