A Loss for Words

Our son Micah was two years old when we learned he was profoundly deaf. I remember him wading in the Florida Gulf waters up to his chest, and it suddenly occurred to me that he didn’t know his name. In his fist, he held a handful of pebbles, and he launched the rocks in flight. I watched as the pebbles glistened, tiny sparks of light, and realized if I called his name, if I screamed, the word would sink like stone.

Micah passed his hearing screening in the hospital, and at age one, he passed a sound booth test. Still, my gut told me something wasn’t right. He wasn’t meeting his milestones. At two, he received an ABR (Auditory Brain Response) test, and we learned he was profoundly deaf. Couldn’t hear a helicopter, the nurse said. Honestly, I felt relieved. Up until that moment, my husband and I knew something was wrong, but we couldn’t put our finger on it. He was a puzzle, and we were grasping at straws. Because he had passed hearing screenings in the past, we had initially suspected that autism or auditory processing disorder were causing his speech and learning delays. Now, we had a diagnosis—a starting point.

The problem was, our starting point was two years late. Early intervention is critical for deaf children to develop language. We had lost two whole years, and all I could think about was the lost time and the thousands of words he didn’t hear. For years, our words had been carried away on silent waves, and I wanted to rage. By age two, hearing children know hundreds of words. Micah knew none.

Our audiologist said he was a perfect candidate for cochlear implants, and we followed the doctor’s recommendations. He was bilaterally implanted, and at three-years-old we turned his ears on. That’s what we call his cochlear implants– ears. But they weren’t ears. I said, “Hi Micah, can you hear mommy?” He screamed and his body trembled. Shock. There are heartwarming videos on YouTube of implanted deaf children smiling and responding positively to their first taste of sound, but that wasn’t our experience.

He refused to wear the eighteen thousand dollar cochlear implants, and his defiance was feral, all head butts to my face and kicking legs and biting teeth. On a daily basis, I would feel the back of his head smack against my jaw, and for a moment everything would go black. The implant surgery alone had cost at least fifty thousand dollars. Auditory verbal therapy was out-of-pocket, the doctors were out of network, what choice did I have but to force him? Micah was three-years-old with no language. His voice didn’t improve.

When Helen Keller wouldn’t cooperate, her teacher Annie Sullivan used brute force. In Story of My Life, Annie Sullivan described how teaching obedience to the deaf blind girl had to precede teaching language. Sullivan compared her work will Keller to house breaking a dog. “To get her to do the simplest thing, such as combing her hair or washing her hands or buttoning her boots, it was necessary to use force, and of course a distressing scene followed.”

At the time, I was doing the best I could to get Micah to submit to sound, to break his strong will, but only my own heart was breaking.

We went to speech therapy as if voice was his manifest destiny, but we saw few gains. Speech wasn’t working.

When Micah was four, I took one too many head butts to the chin and woke up paralyzed on the right side of my face. I couldn’t blink. I couldn’t smile. The doctor said it was Bell’s Palsy, a condition that causes face muscles to weaken. Trauma to the 7th cranial nerve. My face drooped like a stroke victim and for two months, I wore a patch over my unblinking eye. My face was frozen, much like Micah’s voice. Stuck. I blamed myself. I was no Annie Sullivan. I refused to break him, and instead, he was breaking me.

He took the school bus to pre-school, and each afternoon when he got home, my mind raced with questions I longed to ask him: “How was your day? Did you like your teacher? Did you make friends?” When I spoke, his expression was blank. He didn’t answer. By kindergarten, hearing children know several thousands of words. We could barely communicate.

Micah was prelingually deaf, meaning his Deafness preceded language. Doctors say there is a critical window from birth to twelve months for language acquisition. By the time he was four years old, he had a severe language delay, and his window for language was closing right before my eyes. Panic knotted my stomach. We were desperate for language.

I enrolled in American Sign Language classes at the local community college, and his first sign was flower. To sign flower, the right hand grasps an imaginary stem and holds it first against the right nostril and then against the left; and like a flower, Micah blossomed one new sign at a time.

By age six, he was like a new boy, suddenly cracked open, a well of signed words were unlocked and everything changed.

Now, our words are made flesh. We sign plate with thumb and forefinger, balancing invisible discs in air. His rapid hands tell a story. Palms, fingers, eyes. He is all eyes, and I feel his words rather than hear them.

Part of the experience of being a hearing parent with a Deaf child is the barrier of language and clear communication. The contrast of what I hear and what he sees, what I sign and what he understands, can sometimes feels like a chasm. On our good days, I embrace the challenge. But there are bad days too, days of frustration and tears. Learning a new language is a process.

I’ve come to learn that language and communication are not the same thing as voice and speech. My beloved mother tongue is a phantom promise, by which I no longer estimate the value of my motherhood.

American Sign Language is and was the key to unlocking my son, and every time I watch his animated hands fly, I stand amazed as his pristine silence fills a room far more than sound. His is a visual language, slicing air and space. It is the thread that binds me to him, and the thread that binds him to the larger Deaf community; nevertheless, I recognize that cochlear implants are a tool of modern technology. They are not the miracle they profess to be. Deafness is not a disease and cochlear implants are not the cure. Yet for some children, the benefits are impossible to ignore.

At ten, Micah signed I wish I could talk. Wish is signed with a cupped hand facing the body moving down the front of the chest. It is also the sign for crave, desire, hunger, and starve. His old implants have exceeded their life span and warranty. New, upgraded implants cost six thousand dollars on each side. You don’t have to wish, I signed. You can talk with hard work, with practice. He craves to navigate between two worlds, the world of the Deaf and the world of the hearing. Is it too late? It is a circuitous, difficult road, but he isn’t alone on it. Only ten percent of hearing parents learn American Sign Language, but sign is my lifeline, and I have no regrets. Still, if your son asks for bread, will you give him stone? So we started the year-long process of  fighting with the insurance company, and Micah received one upgraded implant.

He is eleven-years-old, and it’s his decision. This time, there are no tantrums, and when I said, “Hi Micah, can you hear mom?” he gives me a thumbs up and smiles. On the way home from the audiologist, he sits beside me in the car wearing his new implant, and I blast “This is Our Lot” by the Wild Beasts. We bob our heads and play air drums like maniacs, pounding the air in time with imaginary sticks.

We don’t have all the answers, but this is a small slice of our journey. Feel free to share your story too. We’re on the road together.

 

 


8 thoughts on “A Loss for Words

  1. What an amazing post! So powerful and emotionally strong! I love learning about others experiences as parents of deaf children like myself! I can’t wait to read your future post! Although I have always love your family, I officially feel honored to know such an amazing family!

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    1. Thanks so much, Bethany! I’m so thankful for our kids and parents like you in our community. It’s made a world of difference to have such a supportive network of families on the road together. Much love to you!

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  2. This is such an amazing recollection of the journey, Beth. I feel honored to have watched from the sidelines, and wish I could be a better support. So much love for you, Micah, Dave and Bella. Each of you have embraced the challenge with amazing grace and courage.

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  3. You are an amazing mother and Micah is blessed to have you! Family Center on Deafness is is fortunate to have you on staff!! Thank you for sharing your journey.

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  4. Hi Elizabeth,

    My wife and I and many of ours friends enjoyed your article in the NYTimes the other day. I just wanted to add that the idea of a critical window for language at 1 year, two years, etc., is a myth. Yes, it’s harder to learn a language the longer you wait, even a second language as I found out learning Spanish at age 65. Our Daughter, Lynn, was born profoundly deaf in 1965 when almost all programs for the deaf in the USA were Oral, and using Sign Language was forbidden. I won’t go into the details of that experience which are in Deaf Like Me which I wrote and was published by Random House in 1978 and Gallaudet Press sometime later. But Lynn was not exposed to Sign Language until she was almost 8 years old. She had no language, and we worked with her hours a day. Fortunately, we met some deaf adults and with other parents started a class with a teacher from Gallaudet. However, not recorded in Deaf Like Me, is Lynn’s slow progress with reading and English at the California School for the Deaf, Berkeley (now Fremont). Though she had excellent deaf signing teachers, the emphasis was on learning grammar. Her Sign Language did explode — faster than we could keep up! — but she graduated from high school reading at the 3rd grade level, which does not prepare one for college or the job market. Then, years after graduation, closed captioning of films and TV were mandated, and, wonders of wonders, the iPhone came along. She began texting with deaf friends, and with interpreter friends who used a vocabulary and grammar far beyond what Lynn used, as were the captions on film and TV. But now she was seeing English as clearly as she saw ASL. Her vocabulary and texting skills took off and continue to this day. While she loves to use ASL with her friends, when texting she loves to use the latest slang, idioms, and vocabulary she has recently learned: “Wh’s up Dad, everything cool?”

    The comments in The Times regarding your article were just as interesting. The same issues we faced 50 years ago are still alive: the crutch of Sign Language is fading away, deaf children would learn to lipread and speak if only their parents would work harder, the deaf are isolated, you want your deaf child to appear “normal” and cochlear implants will do that for her, etc., etc.

    I’m looking forward to more of your blogs and wish you success with the novel you are working on.

    Tom Spradley
    Citrus Hieghts Ca and El Sargento, Baja Sur Mexico

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