Sunday, January 30, 2011

Parent Profile: Kristen

This month's parent, Kristen, is the mother of four, ages 13, 11, 8, and 5. Eleven-year-old Vincent is hard of hearing.  Kristen writes a lovely blog called Mothering Mayhem where she records memories of time spent with her children.

Kristen's Story

My son was born in 1999, right after the newborn screening program was started in Virginia hospitals. At birth, one of my son's ears failed the newborn hearing screening and the other one passed. Because we had no family history of hearing loss, the hospital suggested that the failure was most likely due to fluid in his ear from the birth process.

Because of the relaxed attitude by the doctors, who brushed off the hearing test results, we weren't concerned about his ear failing the screening. We were told that even if he did have hearing loss in that one ear, the only considerations he would receive would be preferential seating in school.

I took our son to an audiologist at Children's Hospital many times for hearing tests, but he was a colicky baby and a poor sleeper. He always awoke before the end of the test.

At twelve months old, in a last ditch attempt to get conclusive test results, he was sedated for a BAER test at Children's Hospital in Washington, DC. We were shocked when the test results showed a severe mixed conductive hearing loss in both ears.

At 15 months old, Vincent started wearing his first pair of hearing aids. He loved them right from the start. He never pulled them out in frustration.

When our son was younger, my husband and I were so worried about his future. We stressed and fought with the school for services. We went to classes and seminars. We basically freaked out that his classrooms weren't acoustically perfect. 

That was a very bleak time. 

We spent so much energy fighting. Life improved after we decided to focus on giving Vincent everything he needed ourselves. He still went to school, but we would do homework together everyday. I could make sure he knew what he was doing and didn't get behind.

Vincent's hearing loss is progressive. For years, his hearing worsened quite a bit. Sometimes there would be a slight improvement, but the overall trend was always downward. After consulting many specialists, we were told that the fluctuations were not a good sign. Vincent would become totally deaf eventually.

For a while I was overwhelmingly sad about his prognosis. I wondered if it would have been easier for him to have been born deaf, rather than going through another period of adjustment (most likely) in his teens.

Vincent has had two ear surgeries in an attempt to stop the progression. The surgeries appear to have stabilized his hearing for the time being, but the future is unclear.

As two hearing parents, we chose to aid our son because his loss still allowed the use of hearing aids and we thought communicating via speech would make his life easier. We made the decision that we thought was right for him. Had we known then that he would eventually lose all of his hearing, we probably would have chosen an alternate route. If his hearing does worsen, now that he is older, he will have a choice about cochlear implants, sign language, or both.

Thanks for telling your story here, Kristen!  There are so many different kinds of hearing loss and many ways to come to a diagnosis.  I wish you strength moving forward as you continue to advocate for Vincent's changing needs.

If you are interested in being a featured parent or have a personal experience with growing up deaf or hard of hearing, please email me at bigteethclouds at gmail dot com.

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