On Deafness

 

Once a week, I teach an American Sign Language class for beginners, and my students are a small group of hearing mothers with deaf children.

In American Sign Language, the sign for HEARING is words tumbling from the mouth, speech spilling from lips, but in class, the hearing mothers spend little time in idle chitchat. Instead, they come to class at the end of what I imagine to be an exhausting day to learn a daunting new skill—ASL.

On the first day of class, we fingerspell our names:

Hello, my name is B-E-T-H.

I fingerspell the letters before signing my sign name, which is the hand shape B–

B by the lips, B smiles.

Like the Native American tradition, sign names are often descriptive, single word narratives. Nutshells of being.

Where I’m from, waves of sound divide mothers and children like train tracks, and that’s why these mothers are committed to learning a new language, to close the cultural divide between the hearing world and the deaf world. They also understand the major developmental hurdle facing their deaf children– acquiring language. As we work through the new vocabulary in class, I’m reminded of the many times in my life that I’ve felt like a beginner: a beginner at marriage, a beginner at motherhood, and a beginner at deafness.

As a writer, I’ve learned all good stories hinge on beginnings, in the same way that a child’s cognitive development hinges on early language intervention. A child’s first three years is critical for long-term academic, social, and emotional well-being. So for my class of hearing mothers with deaf children, this means committing time and resources toward learning a new language. In addition to learning ASL, it may mean participating in speech or auditory therapies, engaging in advocacy, and learning skills you never knew you possessed.

When I look at my class of beginner signers, I feel as if I can see into the nutshell of their being– I see mother warriors paving the way for their children’s success, and I’m incredibly proud and thankful for their willingness to learn new things and tackle the unknown. I try to remember what it was like to be a beginner myself, and I think about the things I wish I’d known earlier.

So here’s my list of 8 things hearing parents should know abut their deaf children:

• For starters, being deaf or hard of hearing is not simply a medical condition. While audiologists tend to focus on the ears, and speech pathologists focus on the mouth, mothers and fathers should consider the whole-child. Being deaf is your child’s normal, and it comes with an invitation to embrace diversity and overcome obstacles. While it is perfectly human to feel shocked, grieved, or frightened upon initial diagnosis, deafness is not the tragedy hearing people perceive it to be. Take the time to actually get to know Deaf adults, and you will find that the only tragedy is lack of early language acquisition and communication barriers, heartaches that can be prevented by early exposure to American Sign Language. Being deaf is a path, the road less traveled, but no less wondrous. The most remarkable people I know are the ones that overcome challenges and persevere in light of obstacles.

• You can have it all. Whether you choose to use hearing aids or cochlear implants, your child can be bi-lingual and bi-cultural. Learning English and learning American Sign Language are not either/ or equations. You don’t have to choose one language versus the other. Your child can be fluent in both languages. But don’t wait. According to neuroscientist Dr. Laura-Ann Petito, “it is imperative to expose deaf babies to sign language early in life”…resulting in “stronger visual attention skills and better vocabulary, higher cognition, language, reading, and self-regulating skills.” Check out Petito’s ground breaking research that explores how “training a deaf child in ASL phonology builds their reading abilities in English.”

• Live one day at a time. When Micah was a toddler, I spent countless sleepless nights worrying about his life-trajectory. I worried that he would be isolated. I worried that he wouldn’t learn to read. I worried about bullies and child predators. I worried that he would never go to college, or never get a job to support a family. The endless stream of worry shadowed me like a monstrous nightmare, sapping my energy, lowering my immune system, and stealing my sleep and joy.

In one of my favorite children’s books, Where the Wild Things Are by Maurice Sendak, “the monsters roared their terrible roars and gnashed their terrible teeth, and rolled their terrible eyes and showed their terrible claws till Max said, ‘be still!’’

 Today, I try to combat my knee-jerk anxiety with the meditative practice of being still, and I am trying to learn the discipline of presence and awareness as a tool to guard myself against anticipating the future. I’ve learned worry doesn’t change a thing, and trying to predict my son’s whole life in a single day is a complete waste of my energy.

• Accept that Cochlear Implant success is a spectrum, not a miracle cure. The cochlear implant marketing materials and the YouTube videos of children hearing for the first time tell parents a narrative of miraculous hope. But for most parents, the marketing of CI’s is a “false representation.” In her book Made To Hear: Cochlear Implants and Raising Deaf Children, Laura Mauldin describes the glossy marketing materials as “manipulative” at worst and “oversimplified” at best. For many parents, it is a day-to-day battle to encourage or force their children to wear the implants. Mothers often take on the added responsibility and stress of implementing the therapeutic culture of speech and auditory therapies. While I have seen amazing results in some children from years of dedicated hard work, I have also experienced first hand the disappointment when the expected outcomes of speech never manifest despite the effort. I would never discourage a parent whose child is a candidate for CI’s from getting the implants. However, I would encourage parents to pursue ASL immediately. Children need language, whether it be spoken or visual language. Don’t waste vital years of brain development waiting on insurance companies to approve surgeries for technology that is not guaranteed to result in positive outcomes.
• Let people help you. One of the hardest things for me is to ask for help. I’m not sure where I learned this value of self-reliance, but I can honestly say the results are feeling like a self-made martyr, feelings of resentment, and feelings of loneliness and exhaustion. I think this is especially difficult for moms who have a tendency toward perfectionism. But mom’s, I hate to break it to you, but there is a gender pattern, and you will be the primary teacher, therapist, advocate, and go-to person for your child, and you will often feel ill-equipped to fulfill all of these roles. Yes, there are great dads out there, but more often, mom carries the educational, social, and emotional burdens of her deaf child. It’s exhausting. Sometimes, it’s exacerbating, disheartening, and infuriating. Recognize when you need a break. Take care of yourself, ask for help, and regenerate. You can’t fill up your child’s cup, if your cup runneth empty.

• Join a Parent Support GroupOne of the benefits of having a deaf child is that, should you choose to participate, you are a welcomed member of the deaf community. In that community there are hearing parents just like you, beginners experiencing emotional pain alongside other parents who know the ropes. At Family Center on Deafness, we have monthly Parent Network meetings, focus groups, ASL classes, and family events, all designed to help parents meet and support one another. The process of grief is real. But the educational hurdles and the challenges are not unique to you. By fostering a supportive community of parents, you will find one day that you have come full circle, supporting others, telling other beginners just like yourself that it will be okay. The amazing thing is, you’ll mean it.

• Give yourself and your child grace. You are not perfect. There will be days when you feel like you’ve failed. Days when you feel like running away from home. There will be days when your child expresses painful feelings about loneliness or challenges at school and you think your heart will break. These feelings are not unique to deaf children. All children feel discouraged. All children experience feelings of insecurity, failure, rejection, and loneliness. Let your deaf child express those feelings, and try not to panic. Try to see those feelings as the human experience, not merely the deaf experience. Remember how often you’ve felt them yourself, and trust that those discontented feelings won’t last forever. There is an ancient Biblical adage in the Psalms that says, “Weeping may last for the night, but joy comes in the morning” (Psalm 30:5). No matter the struggle, it does get better.

• Yes, this will put a strain on your marriage and it’s not pretty. Parents with deaf children find themselves in the quagmire that is Deaf Ed. They often carry the brunt of the oral/sign controversy, and often times wind up fighting each other because that somehow is easier than feeling like you have to fight the whole world. I don’t have the answers to the whys. All I know is, it’s essential to guard your marriage. Take time to nurture your relationship with your spouse, to maintain your friendship, and to keep the doors of communication open. The road is difficult, but it’s easier if you traverse it together. One of the best things you can do for your child is to have a healthy marriage. So guard it. Don’t be afraid or embarrassed to get professional help.

 Do you have other suggestions for beginners on the road of parenting a deaf child? Please share your words of encouragement and wisdom. Like Helen Keller once said, “alone we can do so little: together we can do so much.”