Why I Participate
By Kisha Greenidge-Kader
February 15, 2014
In NICHQ’s work on improving hearing screening across the country, administrators and audiologists work closely with parents to direct and sustain improvements. A mother and advocate shares her story.
My lifelong adventure as a mom began with the birth of my first daughter, Aja Dawn Kader. Even before she was born, I had grand ideas of what my daughter would be like and the leisurely way I would spend her first years getting to know her—spending hours gazing at her, long days relaxing and playing baby games, taking part in baby yoga, library story time as well as a couple of “Mummy and Me” classes. I knew I would worry as any new mom would, but I thought it would be over things like germ exposure or having to learn how to do things for the first time.
Needless to say, I was quite unprepared for the adventure and the uncharted path my daughter would take me on. It all began Monday morning, Aug. 11, 2009 at 2 a.m. Our first pleasant surprise was when I first saw our baby and heard the words it was a girl. I was secretly hoping our baby was a girl and we waited until birth to find out the gender. I was excited!
While we were in the hospital, Aja got her hearing tested during the newborn hearing screening. Outcomes of the newborn screening results stated “refer” for both her right and left ears, meaning she needed a follow-up to determine if there was hearing loss or not. An outpatient follow-up screening test was conducted on Sept. 8, and the results stated “Refer” again for both ears.
On Sept. 29, at 7 weeks old, an auditory brainstem response (ABR) test suggested a bilateral, sensorineural and severe-to-profound hearing loss. It was at this moment—when I heard how her spoken language development would be affected—that I believe I fully understood the impact of hearing loss and our world and my vision changed instantly. This news was a surprise. Aja became the first person with severe to profound hearing loss in our family.
Aja’s first year was spent in and out of hospitals, at doctors’ offices and completing several language development activities. We had subsequent ABR tests completed, several visits to the ear nose and throat specialist, audiologist, cardiologist, geneticist, ophthalmologist, and Early Intervention (EI) services. Aja also received her first hearing aids. Then we considered a cochlear implant and had to go through the evaluation process which included an assessment by a speech therapist, a child psychologist visit, discussions with the audiologist and cochlear implant surgeon, and surgery at 13 months old.
Since I am a hearing mom of a beautiful, smart daughter who was diagnosed with severe-to-profound hearing loss, I had a lot to learn. At the beginning I felt quite alone and isolated so I did a lot of research, often in the wee hours of the morning. I reached out to several families, professionals and groups to find answers. Subsequently, I became interested in joining organizations and serving on committees, like NICHQ’s Improving Hearing Screening and Intervention Systems (IHSIS) project. I wanted to help make a difference in the lives of families with children who have hearing loss as well as my daughter’s life. I wanted to help support families along their journey by providing resources, a lending hand and encouragement. Additionally, I also wanted to advocate for families with children with hearing loss and help these children achieve greater educational outcomes.
The IHSIS program has helped 52 US states and territories improve hearing screening, diagnosis and intervention. Through the program, parent partners like me have helped design and implement improvements to help families get the care they need.
The past four years we have been very active learning about deafness and hearing loss, getting involved in parent groups, learning American Sign Language (ASL), and advocating for our daughter. Aja has a cochlear implant, and we communicate using ASL as well as spoken English. Aja is a bright, perceptive and determined girl and our vision for her is that she will be happy, and a contributing member of society, and successful in life regardless of her hearing loss. As a parent advocate and partner, I hope that all children with hearing loss will have this opportunity.