Hear, hear: my experience as a deaf parent

February 10 | Guest post by Nancy Cavillones
Love - Sign
Photo by Cindy Andrie, used with Creative Commons license.

I took it for granted that one day, I would be someone's mother. I have a lovely mother, and equally lovely siblings. We are a family that embraces partnership and eagerly anticipates the arrival of nieces, nephews, grandbabies. But for a long time, I wondered whether I should — whether it was fair to subject my children to the difficulty of having a deaf mother. I know this sentiment will surprise those close to me but there it is: my secret insecurity laid bare.

But, here I am: a mama of two (so far!). My youngest is 8 months old and my toddler is 2 and half years old. Babyhood, that is, the first year, is pretty easy as far as communication and meeting needs go, I think. It's basically, eat, sleep, poop and play — lots of navel-gazing and snuggles. Whatever fears I had about being a deaf mother were assuaged by that first year. No problem!

Then came toddlerhood, which knocked me flat on my ass. For any mother, toddlerhood is crazy-making. It's such a thrilling, exhilarating, frustrating, awe-inspiring time. My big girl is developing at light speed, right before my eyes — imitating everything I say and do, trying on personas, claiming independence, crumbling into a screaming, sobbing heap on the floor at the slightest provocation, sweetly or not-so-sweetly demanding my attention.

After every meltdown, I ask myself: could I have prevented this particular meltdown? Did it start because I heard something wrong, or answered wrong or didn't hear something at all?

But my deafness — it throws a little wrench in there. After every meltdown, I ask myself: could I have prevented this particular meltdown? Did it start because I heard something wrong, or answered wrong or didn't hear something at all? In my immediate, local circle of mamas, I am the only deaf one and one of only two with a disability.

Kids have the amazing ability to adapt to just about any situation, and this situation is no exception. Alice, my toddler, has a pretty deep understanding of what it means to have a mother who can't hear. She repeats herself at least three times, even when she doesn't have to. Daddy reminds her to talk facing me, I tell her I can't understand her when she talks with her mouth full or covers her mouth with her hand. She tells me to put my hearing aids on and notices when one or the other is missing. She gets exasperated when I don't hear her or understand what she is saying. This is, by turns, both heartbreaking and amusing.

I'm on guard. I don't want Alice to feel like she is being ignored or that I'm not listening or not hearing her. This means that I have to respond to nearly everything she says, even if it doesn't need a response. Sometimes I just repeat what she says; otherwise, I deliver the correct answer or honor requests or say "hold on a second." (Ha! Saying "hold on a second" to a toddler — a futile exercise if I ever saw one.)

I worry that she won't respect me when she's older. I worry that she'll see how condescending people can be towards me, or patronizing, and think that it's okay for her to do the same.

And I worry. Oh, do I worry. I worry that she won't respect me when she's older. I worry that she'll see how condescending people can be towards me, or patronizing, and think that it's okay for her to do the same. Sometimes, when my husband gets frustrated with me, he'll over-enunciate and his voice will be edged with annoyance. It happens, it's harmless enough, but Alice has picked up on that and tried that tone with me more than once. It kills me every time. She will see well-meaning acquaintances and strangers talk to me like I'm mentally retarded. She will see me struggle to understand an accent or a low talker. She will hear unaware strangers take a nasty tone when I'm unknowingly in their way.

And what will I do when we move into a real house instead of living in small apartments? In a small apartment, I can keep tabs on everything. In a house, will I hear the kids playing upstairs? Will I hear them crying for me? Will I notice that it's too quiet, which is never a good thing? Will I hear thumps, followed by screams?

Will my children resent me when I ask or need them to be my ears, as my ever-patient husband often is for me? I already know that I won't be able to have those heart-to-heart talks in the car with them, or talk to them in the dark, or talk to them on the phone when they leave home. (But maybe in that future, no one will talk on the phone anymore anyway — everyone will text, e-mail, Skype.)

Once, during a heated discussion about curing autism, a friend asked if I would cure my deafness, if I could. My answer was no. Without a doubt, no.

I hope that I'll be able to pass on the qualities that I've developed as a result of being deaf. Once, during a heated discussion about curing autism, a friend asked if I would cure my deafness, if I could. My answer was no. Without a doubt, no. I really and truly believe that I would be a different person if I wasn't deaf. Being deaf has forced me to be tenacious, to be a self-advocate, and has instilled in me a sense of compassion and deep empathy for others. I want my children to develop these qualities, and I've tasked myself with figuring out how to do just that.

I've spent my life straddled between two worlds, defying obvious labels. To be deaf in a hearing world, to be independent of yet so dependent on the ears of others, these are the juxtapositions my children will grow up observing and this will be their normal. But I suppose straddling is everyone's normal, isn't it? I'm not alone in seeking the balance that allows us live our lives fully, and I hope that my girls will see that courage and perseverance are all we need to strike that balance and challenge our insecurities.

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  1. "Being deaf has forced me to be tenacious, to be a self-advocate, and has instilled in me a sense of compassion and deep empathy for others. I want my children to develop these qualities, and I've tasked myself with figuring out how to do just that." This just so hits it right home, into the heart of what I hope every parent feels towards their child, and also to their own life's journey. So well put. I admire your courage and your 'tenacity' very much, and I have learned several things here. Thank you!

    7 agree
    • I agree I sure feel that way towards my kids! It really is a statement that I think many mothers can easily agree with.

      1 agrees
  2. I love love loved this!! I am in the process of learning ASL and you remind me so much of my dear teacher, I adore her. She has two daughters as well and is the most amazing mother. As I learn more about the Deaf community and all of the obstacles, and rude and oblivious people there are in the world, it makes me admire women (and men) like you. I think your children will grow up to be very respectful understand caring adults because you obviously are raising them in a loving environment. I think we all worry about how our kids will react to us when they get older. I do very much as I am a very offbeat mama and my oldest daughters father is very onbeat so she has such extremes in parenting styles, ideas and households. Thank you for sharing your story!

  3. I grew up the daughter of a disabled parent. My father had third degree burns over 90 percent of his body from an oil well accident when he was a young man, long before my birth. He never approached the world like he had a disability, even though he had limited use of his hands and arms.

    Growing up with a disabled parent has made me a better person because I saw how he approached the world and how the world approached him. It has made me a more compassionate and attentive person.

    I remember when I was very little, maybe 3, he came to pick me up from daycare and all the other children screamed and cried when they saw his scars. I calmly explained, "He's a daddy, just like any other daddy, he's just a little melted."

    From that day forward, I was my big, tough father's advocate and defender.

    When they are old enough to understand your deafness, your girls will have the opportunity to do the same. Let them. They will still respect and love you, even as they tell the store clerk, "My mom's deaf, not mentally disabled. Speak normally."

    22 agree
    • My mother is disabled and I find myself being one of her fiercest defenders. She walks with a cane and is embarrassed about it a good deal of the time. Whenever she walks, she's in pain, and if she leaves the cane at home but parks in the disabled parking spot (as is her right with her plates), she'll often get snide looks from people who think she's taking advantage (despite the fact that walking is sometimes agony).

      I remember my brothers were once teasing her about her cane, and when I found out, I was the one who sent the stern, angry email to them explaining that under NO circumstance was that appropriate and that how dare they, etc.

      It never occurred to me to treat my mom the same way strangers might, because…she's my mom, and I too feel that by being angry when I see people glare at my mom for parking in a space that is rightfully hers to use, I am more compassionate to others. I catch myself if I find myself judging others because, I remind myself, they may have an invisible disability too.

      Your daughter may grow to disrespect you…but she may also grow to be a fierce advocate in her own right, on your side.

      1 agrees
      • Pip, my mom has MS, and while she's in very good shape, she often needs the handicap parking spots. When she doesn't have her cane, she sometimes gets nasty looks, comments, or even notes, from people who doesn't think she belongs there. She'll sometimes ask if they want to see her scar from open heart surgery- she's never had it, but it's her way of saying, Hey, I need this, but I won't tell you exactly why because it's none of your business. If that makes sense.

        But to add to this, I've always been extremely close with my mom. Granted, she was ill, not disabled (she also has lupus), but I saw the world differently. She couldn't always play with me when I was little, or take me shopping when I was older, and I often had to stay with neighbors for a few days when she was getting treatment and my dad had to work late. It sucked, but I think it's made me a stronger, more compassionate and thoughtful person. And I'm just in awe of my mom and everything she's been through, and how she was still the greatest mom I could ever have despite the troubles over the years. Nancy, I very much believe your kids will turn out just fine. And hey- maybe they'll wind up in school one day with someone who's deaf, and they'll be THAT kid's advocate, because they already know how to communicate.

        1 agrees
  4. This is a unique, beautifully written piece. It is difficult enough to raise children, let alone doing it as a deaf mother, and teaching your children about your disability. I LOVE details like Nancy's daughter mouthing things to her three times, and how her daughter is already learning to understand her mom's deafness.

    The best part about this is that Nancy laid bare her insecurities in this piece, and allowed both her strength and her weaknesses to come through. I would love to read more stories about how her daughters and husband deal with her deafness. Beautiful!

    6 agree
  5. The articles have been extra great on here recently and this is no exception! Very much enjoyed reading your story, thanks for sharing.

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  6. You do have at least one deaf mama friend even if we aren't local, me! :) I know we've discussed the idea that its silly to be friends with someone just 'because' they're deaf… but for me, it really helps having my deaf mama-friends to hang with on playdates and laugh about our perils and struggles as only we can without that feeling of self-pity or unwarranted concern (like: omg you let them play out of your sight without being able to hear!?) that hearing people seem to emanate when I discuss some topics. All our kids are around the same age and we are all stay at home moms, so thats an added bonus. I'm also friends with them because I really, really like them! Its neat to see my daughter who mostly talks with me (she considers sign 'optional" since I lipread her and speak with her as you do with your girls) adapt to signing more with the other mamas who need it. All 3 of us also have hearing husbands, so we get to commiserate about any husband-wife deaf-related troubles too as a bonus!

    Having friends who really relate helped me realize we're experiencing similar things, and our kids are adapting in their own ways, and turning out just fine (and are even made a little more awesome by the challenges). Our shared experiences also gave me some ideas to use or some confidence about stuff, and more security in not inwardly blaming being deaf for some stuff that *could* have been related to not hearing the kid(s) – or letting our husbands blame it on our being deaf! I don't feel so much like I have to 'overcompensate' these days to try to prevent deaf-related problems – if the baby's crying and I don't see him right away, well, its not going to damage him irreparably. ๐Ÿ˜›

    I recently watched a video blog series by a pair of CODA (children of deaf adults) brothers who recount their experiences growing up with (two) deaf parents. So many funny stories that I know cassie has already experienced. It was nice to hear it from the kids' side because you can really tell these guys thoroughly enjoyed their unique upbringing and their shared experiences – that's the fun your girls will have one day, asking each other "did you too secretly believe our mom could hear and she was just lying this whole time?!"

    2 agree
  7. I'm the adult daughter of a mother with a progressive hearing loss. I think my mother's hearing loss has helped me to be a more compassionate, patient and observant person. I definitely remember some frustrations from growing up- like when she couldn't hear me say, "Just a minute!" when she'd knock on the bathroom door- but because she's such a great advocate for herself I've really learned how to be tuned in to other people's particular needs. Coincidentally, I now have several friends with partial hearing loss, and I've been better prepared for things like finding a quieter corner of the restaurant, standing on the side with their better-hearing ear, etc.

  8. Thank you for sharing. I'm the child of a deaf mother, and while I'm sure that my mom had many of the same worries and insecurities while I was growing up, I can honestly say that in my case, her deafness had no negative lasting effects on me. To one of your points, my mom had no qualms about asking me to speak on her behalf at a very young age. She is also an Asian immigrant, and in the very white community in which I was raised (West Side Cleveland), most people assumed that's why I was the spokesperson for our little family. Sometimes I would let it go, sometimes I would rather sassily state, "she speaks ENGLISH, she just can't hear" — like that made the biggest difference. :)

    In fact, I would say that was the biggest factor my mom's disability had in my upbringing — it really forced me to be comfortable approaching adults, speaking my mind, and overall developing a confidence that probably often spilled over to sassiness in adolescence. I had no chance to be shy, in other words, and seeing kids now who hide behind their parents in front of strangers simply boggles my mind.

    What's funny to think about now is that my mom is, to anyone who has met her, a very forthright, outspoken, hilarious person — but she would often encourage me to go ahead and just speak on her behalf, whether I felt like it or not. I never got the impression then that she felt unempowered or lost "hiding" behind her seven-year-old daughter, but I wonder now. Has she just come out of her shell more now that I am an adult, or was she just using the resources she had as best as she could?

    Two other quick anecdotes: when I was a teenager, I would try to take advantage of my mom's disability by waiting in our arguments until she had turned around before I would say the WORST things to her — the things I would never ever ever ever say to her face. And yet, every single time, she would instantly whip around and ask, icily, "WHAT DID YOU SAY???" I realize now this was just mom-instinct, borne partly of the fact that as a teen, you're never as slick as you think you are. But back then, I would have these sneaking suspicions that MAYBE she wasn't hearing impaired! Maybe she could totally hear and was tricking me this whole time to be a sneakier mother!! I tell her this now and she cracks up. :)

    Finally, and this may be more relevant to you at this stage — I'm pregnant with my first child now, and so my mom and I have been talking a lot about when I was a baby. She always insists I was such a great baby, calm, never a big crier, she never had to wake up in the middle of the night. Um, RIGHT. When you ask my dad, he confirms that yes, he was the one waking up every time I cried, especially after my mom took out her hearing aid for the night, he was the one doing nighttime feedings and changes. When I tell my mom this, she just shrugs and laughs, "well, *I* didn't hear you!" :)

    5 agree
    • Ha! Yes! My husband is always the one who wakes up, and my sister jokes that though I don't believe in Crying-It-Out, I might be doing it unknowingly! Horrors!

      I really appreciate reading the viewpoints of kids with deaf parents. I hadn't anticipated that audience, funnily enough.

      2 agree
    • What an interesting perspective !! And hilarious! Thanks for telling your story

  9. I love this post! To me, this is what Offbeat Mama is all about; showcasing the myriad of families out there and how awesome they all are! Keep it up! (I think I've used my exclamation point quota….)

    2 agree
  10. Hello,

    Oh my god! I'm so glad you wrote this article! I'm also a hard of hearing/deaf (whichever label one prefers…I get so tired of trying to accurately convey what I am. I am who I am…) woman, with a cochlear implant and I lipread. I don't have children yet, but that will likely change in a few years. For years, I've wondered how my children would react or cope with my inability to hear them like a hearing person could. How would I hear them cry at night? How would I keep track of them when they're up to toddler shenanigans? How would I talk with them in the car? How will I contact people for playdates and kiddie fun? So many questions that most people take for granted, but I figure that I'll figure it out when the time comes. I've been a classroom teacher for primary school aged kids for many years and one of the biggest things that I often have to contend with is misunderstanding children and dealing with the fallout when it occurs. It's made me a little worried about my own prospective kids. Your article really touched a nerve with me, so it's helpful to see an article written by someone (somewhat like me). Thank you a million times! Feel free to write more about your experiences :)

    1 agrees
    • Lela- I was also a classroom teacher for many years, but at the high school level. Definitely a challenge but I can say that it will prepare you in many ways for when you have your own children.

      As for your questions, you will definitely figure it out. Unfortunately, mama friends are the same as any other friend– you'll quickly figure out who thinks it's worth their while to give the extra effort needed to communicate with you.

  11. Thanks for sharing Nancy, I really enjoyed your writing! I too am Deaf and have similar concerns regarding parenthood. There are moments I know I will be limited as a Deaf parent, but there are other times, I know I will be privileged. I know there will be moments of feeling inadequate and burdensome on my child and I know there will also be moments where I feel I'm providing additional tools and learning for my child that most children won't get to experience in their lifetime. It is going to be challenging, yet rewarding experience, as is the balance in life. I have seen many Deaf/Hearing households and those most successful seem to model their preferred mode of communication and expectations early on in the relationship (with spouse, partner AND children). By modeling how to communicate with you, you are setting the expectations for your needs as a Deaf parent/woman/mommy and furthermore, when you speak up for YOUR needs, you are also teaching her how to speak up for her own. What a great gift to give a young girl (a voice for her needs which many women struggle with, even today). And I have to agree with you… having a patient, supportive partner is SO important and helpful. Kudos to you and all those families out there making things work!

  12. Nancy,
    What a poignant and beautiful piece. Thank you. It's people like you who make us all more understanding and empathetic towards others. I think I can guess who you had that heated discussion with about "curing" autism:) I know your kids will grow up to be loving, intelligent, sincere people, because they are being brought up by 2 people with those same qualities. I'm sure they will grow up to be your biggest defenders, and for that they will be some of the coolest kids out there.

  13. My first thought after reading this article was "YOU GO GIRL!" I think learning to use whatever situation you're given in life to not only make yourself a better person, but as a tool to make your children better as well is a sign of true strength. It is too easy to allow a situation or circumstance color things negatively.

  14. Thank you Nancy. Im also HOH, completely deaf in my right ear since birth. I have always been this way so I cant compare, but I do ok. My biggest fear is that I wont hear my daughter crying at night if I roll over and sleep on my hearing ear, or that I will lose her at a park or mall and not be able to tell what direction she is calling me from. But in many ways, my being HOH is helping my daughter to learn to look at people and make eye contact when she talks to them, because she sees that thats how I talk to her Dad and to other people, face to face. She has all ready learned that when she wants me to come to me, not shout for me from down the hall or across the room. And I like that!

    • Hunny, I've been deaf since birth, too but in both ears, so I can't compare either! The localization thing is definitely a problem for me, too and I'm sure I look like a crazy person at the playground spinning around, trying to figure out from where my name is being called. ๐Ÿ˜€

  15. THANK YOU.

    I don't have children. I hope to someday. I am deaf in my left ear, and completely blind in my right eye. I think we sort of talked about this in another thread.

    This post gives me hope. Thank you.

    • Elsa, you've got one good eye & one good ear, that's all you need! LOL I would be interested in reading more about why you've been told you shouldnt have kids, who said this & what your response was. I cant even imagine what I'd do…

  16. "I already know that I won't be able to have those heart-to-heart talks in the car with them, or talk to them in the dark, or talk to them on the phone when they leave home."

    Have you looked into using assistive listening devices at all? I am an audiologist and I recommend ALDs to all of my patients because so many come in with similar concerns/fears/feelings. FM systems can often help overcome the issues of communicating while in the car. I've worked primarily with cochlear implant users and it's amazing what a difference FM systems can make in those difficult listening situations. And I don't know where you're located but most states have programs that will provide deaf and hard of hearing individuals with captioned telephones. CapTel is amazing technology because you can still communicate orally with the other person while what they're saying is displayed as real time captions on the screen.

    • Thanks, Amy. My mom is actually an audiologist also, and she outfitted me with bluetooth-enabled hearing aids, so I can handle basic phone transactions, with a fairly predictable script, such as making appointments, etc but when it comes to long, intimate chats, it's too energy-draining! LOL. I guess, when I'm lamenting not being able to talk to them on the phone, etc, I'm really lamenting the lack of intimacy and the ability to talk to them anywhere, anytime and not having to being dependent on a technology, which necessarily voids the spontaneity of such an event, somewhat.

  17. I just read this again for the third time and it still resonates just as powerfully as the first!

    I am so proud of you Nancy. You are an amazing mother and friend.

  18. Hello Nancy,

    Great piece. I am hearing but my partner is Deaf. We have an 11 month old daughter and my partner is soon due with our son. My partner and I communicate in ASL, but we both speak Mandarin and English, too (she grew up oral). It's facinating what our daughter picks up already. She babbles both vocally and with her hands. She 'voices off' and vocally babbles in a whisper whenever my partner enters the room. She is already facinated with my partner's hearing aids.

    Have you looked at Harris Comminications for some devices that will let you know when the baby is crying? The have devices that flash lights and vibrate to let you know.

    • Thanks, Eileen! With both of my kids, I have either slept with one hearing on, or my husband will wake up and take care of it/bring the baby to me in bed. I know about those devices (growing up, I had flashing lights for the doorbell and phone, and vibrator under my bed for the smoke alarm) but since we live in such a small space, I can hear them from anywhere in the apartment. Very convenient! ๐Ÿ˜€

  19. My mother-in-law was born deaf and grew up oral, not learning ASL until high school. She and my husband have such an incredible relationship. He is the first born and oldest and often was her interpreter/translator. His mom stayed at home and raised him while dad worked a lot, so he signed before he spoke. He is a brilliant man with an incredible heart who loves his mother very much. Now, I can't lie and say he didn't do the same as Abby and talk back to her with her back turned or play music with less than appropriate lyrics because he knew she couldn't hear it, but I think all teens find ways to mess with their parents however they can.

    Bottom line: he has told me he absolutely does not resent being the go-to guy for his mom throughout childhood. He is truly her fiercest defender in the face of ignorance and will tell anyone that she's the smartest woman he knows. :)

  20. As I already commented on Facebook, I LOVE that you wrote this article and shared it! You write so beautifully and honestly. Reading this was totally eye-opening. You are an amazing mama and a great friend. Feeling so lucky to have you in my local mama circle again!!

    2 agree
  21. I really enjoyed your story about overcoming challenges. It reminded me very much of Ryan Knighton's book "C'mon Papa: Dispatches from a Dad in the Dark", which is an autobiography about a blind father who deals with many of the same issues you do. Definitely worth a read if you have time.

  22. I don't have children yet, but I am hearing impaired. You have certainly hit it on the head with my fears of having a child and not being able to hear them as needed. My husband does the same repeat with annoyance and slowing down to help me.. He doesnt get why I have this *small fear of a child..or even so, what if my child has a hearing issue!
    It's nice to know your not alone. Thanks.

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