When I first met Jane, she didn’t have any language. She sparkled with intelligence and interest in the world around her. She invented games with me—suddenly stopping, then running, when we took walks, to see if I would copy her. She stacked up my fragile teacup collection, then lined them up carefully, remembering the original colored pattern in which I had them displayed. She communicated through her body language. And her tantrums. The deprivation of language in her first two years of life must have been infuriating for such smart and demonstrative little girl.
The first time I did respite care for her, she opened my fridge, and I followed her gaze to my carton of milk. So I signed milk. She signed it back to me. She was about two and a half years old.
Jane is deaf. Or very hard of hearing. It is hard for me to know which term to use. No one knew about her hearing loss until she was placed in foster care. Jane has a profound hearing loss in her right ear, and an oddly shaped hearing loss in her left ear that ranges from severe to normal—depending on the frequency of the sound. She can hear lower frequency speech sounds, like vowels, but not consonants. Since consonants give shape and clarity to words, Jane did not develop language until both hearing aids and sign language were introduced to her. She hilariously confuses words that sound the same to her. Until she learned the signs for each to differentiate them, she thought “waffle,” “pretzel,” and “Rapunzel” were all the same word. She would ask to watch “Cinderella” by signing “umbrella.” I guess in her mind, Disney named their princesses after random household objects.
She cannot locate where sounds are coming from without relying on visual cues. She gets overstimulated and irritable in crowds of moving mouths. Once, I called her name from outside the playground fence around her preschool. She heard her name and began running into the preschool classroom—assuming I had come to pick her up from exactly the opposite direction.
When Jane moved in with me, I started talking to her speech therapist—who was from the auditory-oral school of thought—about the trajectory of her language development. She talked to me passionately about how much Jane’s oral language was growing—about how she had so much potential to fully participate in the “hearing world” with the help of hearing aids and speech therapy. She strongly encouraged me to get Jane a cochlear implant. Jane showed a proclivity towards spoken language. She seemed delighted with her hearing aids. Her oral vocabulary grows every day.
On the other hand, I knew other people—people who were Deaf, CODAs, or people with ties to ASL—who firmly told me that Jane should be raised with sign language as her primary language so that she could participate in the “deaf world.” I was told that this was her natural language as a deaf person.
When I was in high school, I learned some ASL. I have continued to learn ASL to use in my profession as a special education teacher. While I am far from proficient, I have signed with Jane every day since she has moved in with me—and I have continued to learn with her. Jane also has an ASL interpreter in her preschool classroom.
I have also continued to pursue speech therapy. Jane received three to four hours of speech therapy prior to her adoption. After her adoption, her services were disrupted for six horribly frustrating months while I worked to convince her insurance that she was the same child and needed the same services– despite having a new name and living in a new county. She is now receiving two hours of speech therapy per week in addition to her services through school.
When I was in college, I took audiology classes. We once read a book called Choices in Deafness, and held a class debate about the options—ranging from Auditory/Oral to ASL to Total Communication. We also debated cochlear implants. Should parents elect to have their kids implanted at a young age, since the results are much better if the implant is done during early language development? Or should it be the child’s decision, even though CIs implanted later in life yield much more mixed results? On the one hand, the child isn’t choosing the surgery. On the other hand, they can choose to wear the CI or not, once they get older.
I left the class thinking, “I never want to make that decision for my child.”
Jane’s audiologist sent me an information packet about a seminar for parents of children with hearing loss. The packet included the question: “What communication method have you chosen for your child?”
It hit me that I am making the very decision I dreaded as a hypothetical in college. I am not even making the decision consciously; I am making the decision every time my hands or mouth move. Growing up in a monolingual household, this weight never occurred to me. Perhaps bilingual parents feel something similar when they choose words in one language or another—this heavy miracle of imparting a specific means of expression—a form to contain thought and feeling—to another life. T.S. Eliot says,
“Words strain,
Crack and sometimes break,
under the burden,
Under the tension, slip, slide,
perish,
Decay with imprecision, will not
stay in place,
Will not stay still.”
Spoken words do strain. So do signs—in different places and at different times.
While I have been continuing to sign with Jane, I have also been considering the option of a cochlear implant. The permanence of it terrified me. The surgery frightened me. But I also watched Jane very closely and saw her reveling in her speech and in her use of sound. She signs when she needs to, but she also speaks because she wants to. Though she is only four, I have asked her if she likes signing or talking more. She consistently tells me she likes talking.
I also am dismayed and motivated by the rapidly ticking time left in Jane’s optimal early language development. Jane’s language development didn’t begin at birth; it began when she was already well into her toddler stage, and received a horrifically late diagnosis and services. She has half the time of most children to do most of her language development, before her brain slows down and learning becomes harder.
She needs every option. She needs all the help she can get. And she needs it all right now.
After difficult deliberation, I have decided to proceed with giving Jane a unilateral cochlear implant. I will also continue to sign with her and learn ASL myself. Her audiologist isn’t thrilled that I want to keep signing, but she is supportive. Her new Deaf and Hard of Hearing Specialist at school is skeptical of the cochlear implant, but she is supportive. Between the two, I’m making no one exactly happy, but I don’t care.
The surgery is scheduled for March 20th.
I feel uncomfortable with both “hands down” (speech only) and “voice off” (sign only). Jane wants to use her hands and her voice. She loves her hearing aids. The cochlear implant simply replaces the hearing aid in her right ear–which gives her nearly no benefit because her hearing loss is so profound–with an option that will hopefully allow Jane to hear the consonants in speech that she currently misses, while her left ear preserves that natural sounds that she already enjoys. And, meanwhile, I will keep signing. It takes the brain awhile to sort out how to process the stimulation of the CI into intelligible sound. Plus, technology is fallible. I don’t feel that Jane should have to rely on having her hearing aid or CI to communicate, but should be able to use them as tools if she wants them.
And I am going to keep learning to sign. If Jane decides later that she prefers to communicate using exclusively ASL—if she decides that CIs and hearing aids are a nuisance and don’t better her life after all—I won’t be mad. Take them off. I’ll be ready.
I have read opinions on the internet of people who describe cochlear implants on young children as abuse. I have been told that it is an inappropriate attempt to “fix” a deaf child, tantamount to not accepting who that child is. People have told me that Jane’s place is rightly in the deaf world, and that people who get CIs never quite fit into the deaf world (because they are rejected by Deaf people) or the hearing world (because a CI does not replicate the typical hearing experience).
I don’t want to fix her. She is amazing, brilliant, and beautiful. I want to open up doors for her—all of the doors—so she can walk where she wills.
I have had it with this talk of the “deaf world” and the “hearing world.” When people use those terms, they seem to be speaking not only of a culture or institution, but of impassible, mutually exclusive experiences with deep, dark space between them. I understand that this is how some people have been made to feel—how they have been treated. But I don’t believe in that for me and my daughter.
I don’t want a hearing world and a deaf world. I want this one world in which my daughter and I both live and thrive in our communication–I do not care at all what mode that takes, as long as we do it together.
I believe in a single, sensed world of sight and sound—and sometimes the absence of both—in which people bring their hands and mouths to each other in attempts—attempts which strain, crack, and sometimes break—to perform the astonishing act of placing one person’s thoughts in someone else’s mind with signifying sounds and gestures. We say we understand each other and we trust that we do. We find hope between Babel and Pentecost. That we do this at all is incredible. That we do this wildly—in a proliferation of forms—is human. That we do this together is beautiful.
