Our guest on this week’s podcast (be sure to watch on Monday) is Hollie Enniss-Poe, whose son Ben was born with complications that led to early hearing loss. Ben, now 17, is among the more than 90 percent of deaf/hard of hearing children born to hearing parents. Both Hollie and her husband Brian are hearing, and their family resides in Utah.
Hollie shares their experiences with professionals, the surprising source of connection to organizations that could help, and the research, resilience, and persistence needed to navigate the best way forward for Ben and their family.
Organizations mentioned in the podcast, and other helpful links.
- Parent Infant Program, offered through the Utah Schools for the Deaf and the Blind
- Utah Parent Center
- Hands and Voices
- BEGINNINGS For Parents of Children Who Are Deaf or Hard of Hearing, Inc.
Julia: When parents advocate for their children, they teach them to advocate for themselves. School systems can help, they offer parents some options for every IEP or 504 plan (learn the difference in this article). They might not offer all of the options, because they don’t know themselves. If they don’t know, how will parents know? A little research goes a long way and is a big help when meeting with school counselors to set up, or review, your child’s IEP/504. Here are some options that we know of. If you have other options, we would love to hear from you.
- FM system or Hearing Loop
- Speech-to-text Apps
- CART/Live Captioning or TypeWell
- Video to have captions
- Desk placement, sitting up front near the teacher
- Extra test time, extra assignment time
- An hour of rest during the school day
The U.S. Department of Education has great information and resources for IDEA (Individuals with Disabilities Education Act), Section 504 and ADA Title II and your child’s education rights.
Advocating with your child will help them to acquire the tools they need for a successful life, and will give them confidence to request what they need to transition into the workforce. Advocating becomes a lifelong habit.
Chelle: With hindsight, I can see signs of hearing loss in high school years:
- It took a lot of visuals and yelling my name to get my attention in noisy settings such as the hallways between classes.
- I could not hear from the backseat of cars. I had to lean forward to be able to understand what was being said in the front seat.
- I couldn’t hear from other rooms. While I could hear voices from another room, I could not understand what was being said.
At 18 years old, I had my hearing tested because of the onset of tinnitus. I tested in the normal range of hearing, but there was no speech in noise tests back then—now known as hidden hearing loss. I was 23 the next time I tested and my hearing loss was evident by then.
One of my kids has an auditory processing disorder. After researching his learning style, I knew more of what he needed to succeed, and one school refused to help him. I homeschooled him for a few years until we moved and found that the school system there was willing to help. I actively participated with his IEP setup and reviews. This was in 2001 and there wasn’t as much information available then as there is now. I wish I had Hollie’s knowledge back then, I could have thrown in a few more ideas.
As a Hard of Hearing Specialist in Utah, I helped school staff understand the limitations of hearing aids and why the need for an FM system. The Utah Division of Services of the Deaf and Hard of Hearing has a loan program and we loaned the school a personal FM system until they could get one of their own.
Never forget, children with hearing loss face listening fatigue. Classrooms typically have harsh acoustics and reverberation which affects hearing devices.
Michele: When I think of parents of kids with hearing loss who got it right, I go to the Rachels.
1. RACHEL KOLB is a writer, scholar, and disability advocate. She is currently a Junior Fellow in the Society of Fellows at Harvard University.
My first notice of Rachel was from a 2013 essay she wrote on lipreading, Seeing at the Speed of Sound—we native lipreaders recognize one another right away. There is also a short video based on the essay, CAN YOU READ MY LIPS? from LITTLE MOVING PICTURES on Vimeo.
Not long after the essay was published, Rachel was invited to speak at TEDx Stanford (read the transcript) where she talks about what is possible through family support and self-belief. You can read more about Rachel and her family in this 2015 Hands and Voices interview, and Rachel talks about her preferred ways to communicate in this Q&A.
Nine out of ten children with hearing loss/deafness are born to hearing parents, and of those families only 10 percent learn to communicate effectively with their child. Rachel’s parents embraced sign language for their family. Also, Rachel learned to speak with 18 years of speech therapy and she relies on lipreading for most social interaction. She wears a hearing aid in one ear, and a cochlear implant in the other. She majored in English, because reading and writing were always a passion for her.
Rachel’s parents got it right.
- They valued communication and language in a variety of forms.
- Their support network only included people who placed no limitations on what Rachel could achieve.
- They taught Rachel to believe in herself, and that challenges are not outright limitations.
2. In 2002, RACHEL COLEMAN and her sister Emilie created the first Signing Time! video to help their friends and family members learn sign language so they could communicate with Rachel’s daughter, Leah, who is deaf.
In a video presentation, One Deaf Child (minutes 51:41), Rachel talks about being at a conference and stopping at a cochlear implant booth (CI) to see what was new with CI (it had been 6 years since CI first mentioned as an option for her daughter); she met some kids with CI and was blown away. She makes it clear she had always been anti-implant—“I would NEVER do that to my child.”—and felt sorry for children with CI, believing their parents clearly didn’t understand or accept their child’s deafness. Rachel talks more about this in her blog, and you can see Rachel and Leah talk about how Leah communicates in this Q&A video, which unfortunately is not captioned—I used Live Caption in Chrome to caption the video.
Rachel wondered, “What if I actually gave her everything?” She reasoned, “Signing is a tool, hearing aids are a tool… what if she could hear something?” At seven years old Leah asked for and received a cochlear implant; the ENT told Rachel, “You need to stop signing with her,” advice they chose to ignore.
Rachel is a parent who got it right. She was open to changing her mind to give her child everything.
The Kolb and Coleman families gave their children everything.
- Fluency in ASL and English.
- A variety of communication therapies, skills and tools.
- They placed no limitations on what their deaf child could do.
- Found support people who shared their no limits attitude.
- They knew they could and SHOULD question what professionals told them.
- They made decisions that were right for their children and families, and they let their children make their own communication choices.
Like Hollie and Brian Enniss-Poe, they gave their children every opportunity to communicate.
Watch our companion video podcast.