One Family’s Journey
Impatient to Know More
By Stephannie Stiel,
The Stiel Family
I am not a patient person and I don’t like to wait for answers or test results. When I learned that our daughter Sophia failed her newborn hearing screening, I asked the nurse every chance I got if they had repeated it yet and if she had passed. The answer was always the same. An appointment was scheduled for two weeks for a recheck--“probably fluid,” she said. I tried to put the rescreen aside and focus on my new baby. Still, I couldn’t get the picture out of my head of Sophia when my cell phone, next to the hospital dinner tray, caused a noise so loud I nearly jumped out of my skin, yet Sophia didn’t startle or respond in any way. In fact, she had not startled at all since birth. I started trying to make her startle (banging pots and pans behind her head) and watched her like a hawk for any reaction at all to noise – nothing!
My family assured me that she could hear: they saw her startle and that everything was fine. I knew better. I knew this was going to be more than fluid. But I was forced to wait. Finally, when Sophia was three and a half months old, an ABR was performed. With an official “severe to profound bilateral hearing loss” diagnosis, we quickly took action to schedule appointments in Minneapolis to explore our options, including finding out more about cochlear implants. Things seemed to go quickly at that point but not without obstacles.
Deciding about Cochlear Implants
The decision to go with cochlear implants was both easy and difficult. We knew we wanted to give her the opportunity to be able to communicate through listening and spoken language if possible. Sophia received no benefit from hearing aids and spoken language was the language we all knew, including her two siblings. The decision was also very difficult in some respects. Cochlear implants required my baby to have a surgery. In making these decisions we were able to talk to a few deaf and hard of hearing adults, one of whom received an implant as an adult. After many tests, decisions, appointments and conversations, we decided to proceed with simultaneous bilateral cochlear implants.
One of our biggest struggles was figuring out how to communicate with Sophia before she was implanted and how to communicate with her after her implants were turned on. I remember going through several stages of trying to figure out what was the “right” thing to do, fearing I would somehow screw this up. Sadly, I spent a lot of time doing what I thought was nothing because I didn’t know what to do. Realizing this was silly, I began incorporating signs into our day so that we could communicate with Sophia. Looking back, I realized that a lot of the things I was doing as a mom were also benefitting her. I always made sure she could see my face when I talked to her; I used a lot of gestures and gave her a lot of visuals. Although she did learn a few signs, our focus switched to listening and spoken language when Sophia’s implants were activated last fall. Last Thanksgiving, she had been using her implants for almost two months when she finally said her first intelligible, purposeful word-- “Mama.” It was the most beautiful word I had ever heard; it gave us so much hope.
It has been over a year since I heard her say her first word. Others soon came. It is amazing how much these words mean to us and that they are now the milestones that we live by. We just have to smile when she now yells “Get down, Mommy!” as I climb up on the counter to get something high. I felt pride instead of guilt when one of her first words was “Eva” from the movie WALL-E (pronounced just as the character WALL-E would say EEEEEVAAAAA). Today I reluctantly had to tell her to be quiet in church. After all the effort of getting her to talk, now I have to sometimes tell her to be quiet! Each day brings something new. My husband and Sophia were sweeping the floor tonight and she was in charge of the dust pan. My husband was telling her to wait and she said “ready, set, go.” That is a phrase we have never heard her say. We are excited to see what new concepts come to life for her, and are so blessed to have Sophia in our lives.
We have gotten through all of this with the support of family, friends, co-workers and the professionals who work with Sophia who have all been our sounding boards and who are all willing to do what it takes to help Sophia reach her full potential. Besides finding support from our wonderful team of professionals in ND ranging from speech pathologists, teachers of the deaf and early intervention specialists, we have found support from Hands & Voices, Northern Voices and the Moog Center for Deaf Education via Skype. We have also found some wonderful learning tools at the Art and Learn store in Fargo.(They have wonderful flashcards and picture cards and many manipulative objects to learn shapes, colors, fruits, vegetables and countless other things.)
We know now that goals and services are not a one size fits all kind of deal. We have learned to listen to what is offered and then think outside the box about how to tailor supports for our family. We have found connections with other families and professionals to be so beneficial. Don’t be afraid to ask the tough questions! We are all working towards the same goal, right?
We definitely have a new “normal” and went through many changes as a family to get here. Initially we were devastated with all the unknowns: will we have to move? Will we have to send her away to school? Will she ever have a boyfriend or go to prom (silly now, we know!) What lies ahead for us? Can we handle this? But today we feel so much better because we are informed about what lies ahead. Today we feel lucky and blessed. We are just like any other family: snuggling up on the couch to watch family movies or heading to the lakes in the summer. We are thankful for this new perspective on life.