Lipreading Mom’s Note: When I think of an inspiring role model for all of us lipreading moms and dads, I think of Denise Portis. This mom of two not only thrives with a profound hearing loss, but she lives with the balance-affective condition Meniere’s Disease. The first thing I noticed about Denise was her sense of childlike wonder. In many photos, Denise hangs out with a cute canine named Chloe, her lovable hearing service dog. On her blog, Hearing Elmo, the main image is of Denise snuggling with a dozen red Elmo dolls. After receiving a cochlear implant, Elmo’s vibrant, giggling voice was the first sound Denise heard. Denise shares how her hearing loss journey models creativity and compassion to her two children.
My children are 11 months apart. I clearly remember my husband turning to me in the family room in 1991, while I rocked our youngest (then 4 months) while he played with our oldest child – a precocious toddler.
“Honey… I think your hearing is worse. You aren’t even hearing the phone ring now,” he said with concern.
I was defensive. I was apologetic. I was scared. When we discovered that I could actually get my hearing screened free of charge, we went at once to a local audiologist to get a baseline audiogram. The audiologist looked concerned as I repeated words back to her as she looked at me through the glass of the sound-proof room.
She reached up and covered her mouth with a card and I stuttered out, “Well… well put that down or I won’t hear the words!”
We both realized, as did my stunned husband watching the testing, that my hearing was much worse than any of us realized. Diagnosed with sensorineural hearing loss, the following years would prove that my hearing loss was progressive and permanent.
I refused to stop being an active participator in the noisy world in which my children were living.
My first hearing aid was a refurbished used aid. Eventually, a permanent “hearing aid piggy bank” housed all the extra funds our family was able to do without each month. I learned to not feel guilty about saving for the technology needed to better hear those I loved.
I implemented special games as my children learned to speak such as grabbing precious, chubby cheeks and saying, “I see you. I hear you—or—I can’t see. I can’t hear you”. They learned to place their little hands on each side of my face and talk to me with expressive, clearly enunciated words. “Mommy, I see you. I hear you!” Eye contact became a habit; to see was to hear. My children learned this early along with American Sign Language which we all learned for those moments when the hearing aid batteries were dead or if we decided to walk in the rain.
I needed and reached out for support. I found it through the Hearing Loss Association of America, Association of Late-Deafened Adults, and the “Say What” Club. My family was active in participating in numerous service opportunities as we worked together to raise awareness about hearing loss. By meeting people from all over the country with hearing loss, my children learned that hearing loss was not a respecter of persons. It touched the lives of every age, gender, race, religion, and language. They learned that hearing loss not only was experienced differently by other people, but also that other people experienced hearing loss with different attitudes. My children learned that with hearing loss, sometimes other issues came into play such as balance issues, tinnitus, and even vision loss. Despite my youngest having a speech impediment, both children learned to communicate with eye contact, clear enunciation, and respect.
My children may have grown up to be exactly who they are even if they did not have a mom with hearing loss and eventual deafness. Both make decent grades and are attending college. I’m not impressed with pomp and circumstance, however. What impresses me most about my young adult children is who they ARE.
My oldest is almost finished with a BS in Psychology and works in a testing center for a local college. Students with special needs ask for her by name when setting up test times as she is so good at reading out loud and communicating effectively. She assists when students come in who are deaf and need someone who knows sign. However, she also gives hints to co-workers when a student comes in for testing that has hearing aids or cochlear implants and uses oral language. She has helped educate others about how important it is to speak clearly, eliminate background noise, and face the individuals with hearing loss.
Our son works in a busy environment in dining services of his local college. He will go out of his way and ask to serve anyone who comes up with any kind of disability. His job is in an area where he sees all individuals who appear “different” or are differently-abled. He goes out of his way to help in whatever way he can while they are placing orders, carrying food, or needing assistance.
Would my children SEE and reach out to people if their mom had not been deaf? Perhaps… however, I do know that when you teach a child how best to communicate with you right along with when you are playing “Patty-cake” and “Peek-a-Boo”, they learn at a very young age how important our lips, tone, volume, and expression are as they communicate. They learn to see people. They learn how important it is to people to be heard.
At the age of forty-seven, I have almost lived as much of my life with hearing loss as I did with normal hearing. There are many reasons why I would not change who I am. Hearing loss does not define me, but it changed me and changed my children. My “new normal” with a cochlear implant, Meniere’s disease, and a service dog, also became a “normal” for my children. I am so thankful that my hearing loss taught my children that everyone is “normal” in their own way.
Denise Portis is the founder of Hearing Elmo, a 9-year-old blog about hearing loss, disabilities, and service animals. Numerous guest writers have shared information about invisible illnesses, disabilities, and deafness. Denise lost her hearing at 25-years-old and eventually received a cochlear implant in 2005. Denise has a MS in Psychology and teaches for a local community college in Annapolis, MD. She and her family are active in their community with organizations that advocate and serve hearing loss populations as well as service dog organizations. You can reach Denise at firstname.lastname@example.org.