Julia knows her "ear helpers" help her hear better.
I can remember my earliest concerns, fears, and questions: Will she learn to speak correctly? How will the hearing aids become part of an already busy morning/bedtime routine? Why didn't we catch this hearing loss sooner? Will she attend regular grade school? What help will she need there? How can I protect her from teasing? How will she hear the fire alarm in her college dorm? Will she be able to hear her baby's cry at night? Some of these concerns are still relevant, but I feel more empowered, and even more inspired today than I did two years ago.
My daughter, Julia, passed her newborn screening test at the hospital in February 2002. She did not babble or coo as a baby, and her speech did not develop at the normal pace. She was enrolled in speech therapy in July 2004 and she made good progress. Julia had a few ear infections with fluid in the ear, and finally received ear tubes in February 2005 at age three. Her hearing was tested prior to that time, but no one could give a definite diagnosis, I was told, due to the fluid in her ears. (Also, sometimes when my husband or I called her name, she would not turn around, though she was only ten feet in front of us). After the placement of the tubes, Julia's hearing was tested for the fourth time and I expected a normal audiogram, but instead was told that Julia had a mixed hearing loss and should be fitted with hearing aids for both ears as soon as possible. I was never in denial that she had a hearing loss - I just couldn't wait until she could hear some of the same sounds as all of us. And that is what happened in May 2005 on the way home with her new hearing aids, when she told me she had never heard an ambulance siren before! I watched as she soaked in all of those new sounds. In August 2005, Julia had a CT scan to see what could be causing her hearing loss. The scan showed her middle ear bones were probably fused together, and they could be surgically repaired sometime in the future. Also, Julia has EVAS (enlarged vestibular aqueduct syndrome), which means her hearing loss may deteriorate in time. So what did that mean for Julia? I knew she had to really intensify her speech therapy and overcome some of the speech sounds that were eluding her, if her hearing loss became worse. And she did work extremely hard for the next nine months until she was discharged from speech therapy in May 2006 - exactly one year after receiving hearing aids!She is not defined by her hearing aids or disability, but as a six-year old girl who likes horses, riding her bike, learning to read, playing video games, ballet and tumbling classes, and swim lessons. During the past year, Julia attended a regular preschool and is socially and academically on the same level as her peers. This year, she will enter kindergarten in our local school district. In our home, Julia receives no "special treatment," and when she misbehaves, she is reprimanded in the same manner as her two siblings. I do make some exceptions: for example, if she is trying to watch television and siblings are too loud, I ask them to leave or stop the noise. Also, when talking to her in a noisy environment, I will make eye contact first and let her read my lips, or bend down and speak closely.Julia has never once felt sorry for herself. She believes her "ear helpers" (what she calls her hearing aids) help her hear better, just as her eyeglasses allow her to see more clearly. She is learning to advocate for herself in asking others to speak up or repeat themselves. As a parent, I believe your best tool in understanding hearing loss is knowledge. It is easy to be fearful of something you do not understand. Knowledge is power. Be a sponge. Read and stay informed about hearing-impaired issues. I feel confident to answer any questions or describe Julia's hearing loss to professionals, teachers, other parents, family, etc. I still get sad and angry sometimes when I want so much for her to have normal hearing, or I want to protect her from hurtful words she may encounter one day. But my main focus always remains: What can I do to help Julia today?She is truly an inspiration to me in all that she has overcome so far, and I look forward to seeing what she will accomplish in the future.Chrystie, mother of Julia
