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Life After a Child’s Diagnosis - Motherlode Blog - NYTimes.com
This week was Deaf Awareness Week, and we are closing it out with a guest post from Linda Shiue, whose seven-year-old daughter was diagnosed with hearing loss several years ago. Her essay is about the particulars of capturing sound, but her feelings will be familiar to any parent who has had to take a new look at life in the face of a child’s diagnosis.
Being Heard
By Linda Shiue
“I am not going to sugar coat this,” said the audiologist. “Your daughter has hearing loss in both ears and needs hearing aids, and there is a chance that she may lose all of her hearing.”
I was in shock, I burst into tears, and I could not believe. How could this be? My daughter, 5 at the time, was truly the most articulate 5-year-old I had ever met, speaking with crisp end consonants, singing with nearly perfect pitch, and able to speak the words of even tonal foreign languages with a native cadence. Our journey to the audiologist’s office began only because she did not pass her hearing screen during her kindergarten entrance exam at her pediatrician’s office. Neither her doctor nor I believed these results — after all, it was a crude test performed with her sitting on a loudly vibrating refrigerator. She had never even had an ear infection. Nobody in her family, ourselves included, nor in her small preschool had noted any problems with her hearing.
“Why are you so upset?” the audiologist continued, “What’s the difference between wearing hearing aids and wearing glasses?”
All I could hear were her words, “And she might lose all of her hearing.” My mind jumped ahead to my formerly “normal” child, no longer able to hear any sounds in the world around her. I imagined the worst, that her hearing loss would lead to teasing by other children, that she would grow up friendless, develop low self esteem as a result, and become easy prey for abusers and predators. I imagined her getting hit by cars she couldn’t hear. And I began to mourn the life I had imagined for her, filled with music, language, and friends. In my reading, I came across a quote from Helen Keller that described blindness as separating a person from things, but deafness as separating a person from people. I felt despondent.
I cried on and off without provocation, much as someone who has lost someone dear to them. Because I had. I had lost my image of my “perfect” child. I imagine this is a stage that all parents of children with disabilities must go through.
After several weeks of feeling just sad, I decided to be proactive. I gave myself a quick education on hearing loss, hearing aids, and the world of special education. After several months of denial and hesitation, I decided to follow the audiologist’s advice to get her a medical evaluation, hearing aids, and request a special education evaluation at her elementary school.
My first roadblock was my husband, arguably in even more denial than I was. “She’s fine and I am not going to let my daughter wear hearing aids and get teased.” He also worried that the amplification from hearing aids — essentially little speakers for the ears — could actually worsen her hearing.
The second roadblock, even more unexpected, was the school. I had a friendly relationship with her school’s principal, and was surprised when my letter requesting an evaluation was ignored. I persisted for months to get her evaluated, and at the end of that I was told that my daughter did not qualify for special education, because she was doing too well in school. All told, it took nearly a year from my initial request before she had an educational plan written and approved to give her the classroom amplification that was recommended by her hearing specialists.
Six months have now passed since my daughter got her first pair of hearing aids. Contrary to our fears that she would be made fun of for her hearing aids, she is proud to show them off, and chose a pair in pale pink that she had fitted with ear molds (the part that goes in the canals) custom designed with silver and pink glitter. Because I won’t let her get her ears pierced until she is 13, my girly girl has chosen to treat her hearing aids as accessories. She adorns them with removable stickers, matched to either her mood or her outfits.
Her peers, for the most part, are fascinated by her hearing aids (with of course a few exceptions — there will always be teasing), and even jealous that with the classroom amplification, she gets to hear the teacher’s voice more clearly and might even get to hear secret conversations, should the teacher forget to turn off her microphone. (Superpowers!)
And my initial fears, of her missing out on sounds and experiences? These fears should have been erased immediately. From the second her hearing aids were placed on her ears, her face lit up with a huge smile, and she told me, “Mama, I can hear the air!” She spent the next week telling me all the sounds that I had no idea (and she had no idea) that she had never heard: air (wind), motors humming, birdsong, the tick-tock of clocks. These revelations made me shed tears, too, for I felt that we had deprived her so long of being fully in the world. And as for learning foreign languages and music, I am proud to report that she is still excelling in those, learning Italian and Mandarin, and learning to play piano beautifully and with nuance. Far from being isolated by her hearing aids, she seems to be breaking out of her shell and is becoming ever more self-assured, surrounded by friends.
I still get sad from time to time, when I see something that reminds me of what she might not experience or hear. My husband and I are both physicians, and the first time I saw her with her hearing aids in her ears, I thought, “she’ll never be able to use a stethoscope.” I see older, more hearing impaired patients who do not speak clearly, and even though nobody would be able to tell from observing or conversing with my daughter that she is hearing impaired, my heart drops, because I know I still have not fully accepted that she is disabled. My mind again jumps ahead, and I worry that boys won’t like her because of her hearing aids.
I don’t really like to talk about her hearing loss; in fact, somehow we have not even shared this information with some of our closest friends, and even some family members. Part of it is that I have come around to feeling that hearing loss is truly such an integral part of my daughter now, like her hair color, that it is not worthy of comment. But I wonder if it is also because I might not have fully accepted yet that my daughter has a disability.
This week was Deaf Awareness Week, and we are closing it out with a guest post from Linda Shiue, whose seven-year-old daughter was diagnosed with hearing loss several years ago. Her essay is about the particulars of capturing sound, but her feelings will be familiar to any parent who has had to take a new look at life in the face of a child’s diagnosis.
Being Heard
By Linda Shiue
“I am not going to sugar coat this,” said the audiologist. “Your daughter has hearing loss in both ears and needs hearing aids, and there is a chance that she may lose all of her hearing.”
I was in shock, I burst into tears, and I could not believe. How could this be? My daughter, 5 at the time, was truly the most articulate 5-year-old I had ever met, speaking with crisp end consonants, singing with nearly perfect pitch, and able to speak the words of even tonal foreign languages with a native cadence. Our journey to the audiologist’s office began only because she did not pass her hearing screen during her kindergarten entrance exam at her pediatrician’s office. Neither her doctor nor I believed these results — after all, it was a crude test performed with her sitting on a loudly vibrating refrigerator. She had never even had an ear infection. Nobody in her family, ourselves included, nor in her small preschool had noted any problems with her hearing.
“Why are you so upset?” the audiologist continued, “What’s the difference between wearing hearing aids and wearing glasses?”
All I could hear were her words, “And she might lose all of her hearing.” My mind jumped ahead to my formerly “normal” child, no longer able to hear any sounds in the world around her. I imagined the worst, that her hearing loss would lead to teasing by other children, that she would grow up friendless, develop low self esteem as a result, and become easy prey for abusers and predators. I imagined her getting hit by cars she couldn’t hear. And I began to mourn the life I had imagined for her, filled with music, language, and friends. In my reading, I came across a quote from Helen Keller that described blindness as separating a person from things, but deafness as separating a person from people. I felt despondent.
I cried on and off without provocation, much as someone who has lost someone dear to them. Because I had. I had lost my image of my “perfect” child. I imagine this is a stage that all parents of children with disabilities must go through.
After several weeks of feeling just sad, I decided to be proactive. I gave myself a quick education on hearing loss, hearing aids, and the world of special education. After several months of denial and hesitation, I decided to follow the audiologist’s advice to get her a medical evaluation, hearing aids, and request a special education evaluation at her elementary school.
My first roadblock was my husband, arguably in even more denial than I was. “She’s fine and I am not going to let my daughter wear hearing aids and get teased.” He also worried that the amplification from hearing aids — essentially little speakers for the ears — could actually worsen her hearing.
The second roadblock, even more unexpected, was the school. I had a friendly relationship with her school’s principal, and was surprised when my letter requesting an evaluation was ignored. I persisted for months to get her evaluated, and at the end of that I was told that my daughter did not qualify for special education, because she was doing too well in school. All told, it took nearly a year from my initial request before she had an educational plan written and approved to give her the classroom amplification that was recommended by her hearing specialists.
Six months have now passed since my daughter got her first pair of hearing aids. Contrary to our fears that she would be made fun of for her hearing aids, she is proud to show them off, and chose a pair in pale pink that she had fitted with ear molds (the part that goes in the canals) custom designed with silver and pink glitter. Because I won’t let her get her ears pierced until she is 13, my girly girl has chosen to treat her hearing aids as accessories. She adorns them with removable stickers, matched to either her mood or her outfits.
Her peers, for the most part, are fascinated by her hearing aids (with of course a few exceptions — there will always be teasing), and even jealous that with the classroom amplification, she gets to hear the teacher’s voice more clearly and might even get to hear secret conversations, should the teacher forget to turn off her microphone. (Superpowers!)
And my initial fears, of her missing out on sounds and experiences? These fears should have been erased immediately. From the second her hearing aids were placed on her ears, her face lit up with a huge smile, and she told me, “Mama, I can hear the air!” She spent the next week telling me all the sounds that I had no idea (and she had no idea) that she had never heard: air (wind), motors humming, birdsong, the tick-tock of clocks. These revelations made me shed tears, too, for I felt that we had deprived her so long of being fully in the world. And as for learning foreign languages and music, I am proud to report that she is still excelling in those, learning Italian and Mandarin, and learning to play piano beautifully and with nuance. Far from being isolated by her hearing aids, she seems to be breaking out of her shell and is becoming ever more self-assured, surrounded by friends.
I still get sad from time to time, when I see something that reminds me of what she might not experience or hear. My husband and I are both physicians, and the first time I saw her with her hearing aids in her ears, I thought, “she’ll never be able to use a stethoscope.” I see older, more hearing impaired patients who do not speak clearly, and even though nobody would be able to tell from observing or conversing with my daughter that she is hearing impaired, my heart drops, because I know I still have not fully accepted that she is disabled. My mind again jumps ahead, and I worry that boys won’t like her because of her hearing aids.
I don’t really like to talk about her hearing loss; in fact, somehow we have not even shared this information with some of our closest friends, and even some family members. Part of it is that I have come around to feeling that hearing loss is truly such an integral part of my daughter now, like her hair color, that it is not worthy of comment. But I wonder if it is also because I might not have fully accepted yet that my daughter has a disability.
