Hello Mighty Voice readers! Today I am so excited to bring you this interview with Tali, whose son Jacob wears a BAHA (bone anchored hearing aid). This is the first in a series of stories of families who have a children with hearing loss and what that journey has looked like for them. Tali and her husband are great advocates for Jacob, and he is thriving with his hearing technology. I hope you enjoy reading more about their story. -Bridget
Can you tell us a little about yourself and your family?
We have a family of 5. My husband, Eric, made a big career change almost 4 years ago when we bought his family’s farm and we moved to Iowa. We have cattle and pigs and Eric also farms corn and soybeans. I work from home for Southeast Area Cooperative out of Beresford – I do the Medicaid billing for related services for a number of school districts.
Our daughter Ella is 14 and will be a freshman in high school. She just finished a competitive gymnastics career and is now busy with softball, show choir, choir and dance team. Our identical twins, Jacob and Boden, will be 12 in a few weeks. Jacob has severe to profound hearing loss in his left ear. He just switched to the tuba from the baritone, and is taking tennis lessons as well. Boden plays the trombone. They’ll be going into 6th grade this fall. Both boys love being outside and riding their dirt bike and four wheeler. We also have a Boxer named Gus who is a big part of our family!
I know your pregnancy with Boden and Jacob was complicated. Can you tell us how and when you found out Jacob had hearing loss?
Jacob and Boden suffered from Twin to Twin Transfusion Syndrome in utero. This is an often fatal disease that affects identical twins. We had surgery when I was 18 weeks pregnant and their condition improved. They were born at 32 weeks. Due to their prematurity and speech delays, they began receiving speech therapy at 18 months.
At 3 years, their continued speech delay prompted our family doctor to recommend hearing tests. It was at this time that we found out that Jacob had some degree of hearing loss. Although his audiologist is not certain, we feel that Jacob’s hearing loss is due to a bout with meningitis when he was about 2 years old. Jacob had a sedated hearing test that showed the degree and severity of his hearing loss.
What was the initial diagnosis process like for you guys, and how did you decide on a BAHA?
It was a pretty big shock and adjustment, but it also explained some things. Most of it was thinking – how in the world are we going to keep a hearing aid on a 3 year old? What will school look like? Will he run into any issues with other kids due to his hearing aid? Jacob took it all in stride. He wore a regular behind the ear aid for the first 2 years. Once we realized that the hearing aid did not boost his hearing to a level that was beneficial to him, we started exploring other options.
Jacob had an amazing liason with the South Dakota School for the Deaf – Kami Van Sickle. She introduced us to the BAHA and Jacob was able to use a BAHA on a headband to try it out. She also gave me contact info for a family in Sioux Falls with a daughter that had a BAHA so I was able to really ask that mom a ton of questions – and I had a lot! The improvement was pretty obvious right away and we started looking into the BAHA surgery for him.
The hardest part for us was knowing it was a surgical implant, and really thinking about how this would impact Jacob long term. Making this decision for him rather than really being able to get his input, due to his age, was hard. But we knew that we wanted him to have the opportunity to hear like his peers and we knew this was the best way for that to happen.
For those who don’t know, can you explain how a BAHA works? How does Jacob do with it?
The BAHA is a Bone Anchored Hearing Aid. There is a titanium implant in his skull, on the left side and an abutment is screwed into that implant. His BAHA device snaps into the abutment. The BAHA receives sounds and through bone conduction takes those sounds through skull and draws the sounds into his right ear.
One of the most important things for people to know about unilateral hearing loss is that hearing on both sides is extremely important for hearing, especially speech sounds. So, a person with unilateral hearing loss that is unaided, will miss a ton of speech sounds. The BAHA helps Jacob hear sounds happening on both sides of him. Jacob went through 2 initial surgeries and a follow-up surgery to implant his device.
I remember you posting about talking with Jacob’s class at school about his BAHA. What does that process look like for you, and has that changed as he’s gotten older?
Jacob was in kinder prep when he got his BAHA. His classmates were 5 and very curious! At that age I kept the information really limited. Basically just “this helps Jacob hear and we shouldn’t touch it.” 🙂 We have a little plastic tube that we can snap the BAHA into and hold to our head with our ears plugged, and we can experience the same sounds Jacob hears with the device. I always take that with because that really helps the students (and teachers!) understand what Jacob experiences.
Jacob has been on either an IEP or 504 plan since we found out about his hearing loss (and prior, with his speech delay). That plan specified things like giving him extra time to answer questions, making sure his good ear wasn’t next to a fan or air conditioner, making sure his teacher was understanding of the equipment (a sound tower for microphone), that kind of thing.
As Jacob has gotten older, he has been working more on self-advocacy. He began middle school in the fall of 2018 as a fifth grader, and we had him lead a meeting with his fifth grade teachers. I had him write everything down so he’d feel prepared. Jacob basically explained his BAHA, why he has it, how his teachers can help him succeed. He uses a microphone that the teacher wears around his/her neck. This sends whatever the teacher is saying directly to his BAHA. If he is working on a group project, the teacher will put the microphone in the middle of his table so he can hear his classmates. He brings the microphone from class to class.
We have had really wonderful teachers that want Jacob to succeed and are so open to whatever equipment or needs he has. Right now Jacob also has a coordinator through the Northwest Iowa AEA that visits his class to make sure he has whatever he needs.
Was there anything you wish someone had told you during the early years, or anything you wish had been done differently?
I think we focused for a long time on guilt. We felt a lot of guilt about not catching his hearing delay sooner. I think I would have benefited from being in contact with other families with a child with hearing loss sooner. It can be a very hidden disability and one that people don’t always associate with young children. We realized that Jacob was missing a lot in preschool, or his teachers thought he was ignoring them or just not following directions, when in fact he just didn’t hear them and didn’t have the self confidence or knowledge to raise his hand and ask the teacher to repeat herself.
What has surprised you (if anything) about parenting a child who has a hearing loss?
The resilience of children. Realizing that we (as his parents) were a lot more worked up about it than Jacob ever has been. He’s been dealing with his hearing loss for so long that it’s just part of him. He is so responsible with his BAHA and has never lost it. Children can handle a lot more than we give them credit for! I’d also say that other kids have been a lot more accepting than I anticipated. Once they understand what his BAHA is used for, it’s just not a big deal.
What advice would you give to other parents just finding out their child has hearing loss?
Advocate for your kiddo. Find a good audiologist and contact the School for the Deaf to get a liason. Push for an IEP or 504 to make sure your child is receiving what he or she needs in the classroom. Reach out and find other parents that are either going through it also or have gone through having a child with hearing loss.
Anything else you want to share?
There was a time early on when we were a little embarrassed or felt like bad parents because our boys needed speech therapy. We didn’t have any friends with kids that were receiving therapy so we felt pretty alone. Now I know just how incredibly beneficial it was and also that we weren’t bad parents – in fact we were good parents because we got our boys the help they needed to succeed!
Have more questions for Tali? She would love to talk with any families who have children with hearing loss that want to connect. She can be reached at email@example.com