And I thought the cochlear implants were for her …

Pic of Lei from behind, her aquamarine processor is visible.
Lei heads back to school with her new CI activated for the first time. October, 2014

Last summer Lei and I were talking one night before she went to bed. She had been reading a book that I thought  put too much emphasis on the romantic interests of a girl barely older than Lei. I said I want her to stay focused on developing her inner self, not her appearance.

She replied, “I’m worried I’m going to lose all my confidence and only care how I look to boys. That’s why I want a cochlear implant.”

What now?

She said she could barely hear anymore, even with her high-powered hearing aids, and had to ask people to repeat things for her over and over, and she still couldn’t make out what they were saying. She said she felt like she was losing her self-confidence and retreating into herself.

All-righty then.The next day, after a long talk with my husband,  plus a few tears and deep breaths, I called our insurance about where we could go to get her evaluated for a CI.

A few months later she had her first implant. That was October, 2014.

When the implant was first stimulated two weeks later, Lei heard my voice and burst out laughing, choking out a description while doubled over: You sound … like you inhaled … a blast of … helium!

Now four months later she has just had her right ear implanted. Today we go to the surgeon so she can be cleared for activation in two weeks.

When Lei was first diagnosed with moderate-to-severe hearing loss, cochlear implants were a controversial topic among deaf and hard-of-hearing adults, though many ENTs and hearing parents saw them essentially as a cure for deafness.

People in the Deaf community, seeing deafness as an identity and vibrant culture with its own language, arts and history, didn’t (and don’t) see it as something that needs to be cured. Hearing parents, however, frequently haven’t ever met or gotten to know a Deaf adult. For them, deafness presents a very big problem: how am I going to communicate with my child?

Fortunately, before having Lei, I had taken an ASL class while in grad school, taught by a Deaf adult who, in addition to being a terrific teacher is also a gifted actor. I could imagine Lei as a confident and capable deaf adult. I also knew about the cochlear implant controversy and was hesitant to plunge right in with an invasive surgical “solution.”

As I was absorbing the news of Lei’s hearing status, Hurricane Katrina was raging through New Orleans. Television news showed babies separated from their families and people dying for lack of clean water or electricity. Even though I was far from the devastation in New Orleans, I got Lei an identity bracelet with my phone number on it. I also decided I didn’t want to be too dependent on technology.

But I got used to carrying hearing aid batteries everywhere. I got used to having Lei check to see if her aids were working. We signed and spoke at the same time (this is known as Simultaneous Communication, Contact Signing or Total Communication). Lei could hear decently with her hearing aids. I figured that I would follow Lei’s lead when it came to cochlear implants.

One challenge of our choice to use Total Communication was that Lei wasn’t always interested in looking at me and her dad when we signed. We both worked hard to learn to sign and made sure we signed as much as possible, but to sign and speak to a hard-of-hearing, signing, lipreading child who didn’t maintain eye contact made communication extremely difficult.

And over the following years I learned something about myself. I am soft spoken. Even when Lei wore her hearing aids, which worked quite well for her, I had to speak up because frequently she wouldn’t look at my face or hands to lipread or see my signing.

“Lei,” I would boom, “Are you hungry?!” I was exhausted, sleep deprived, obsessively learning sign language, and busy being a full-time language instructor, cook, housekeeper and laundry technician. Raising my voice felt like so much extra work, but I wanted to make myself heard.

It happens that, like many children, Lei can be a bit of a non-responder even when she hears me. But how did I know for sure she could hear me? So I would repeat myself, but louder this time.

“LEI! ARE YOU HUNGRY?!”

The effort of projecting and the need to repeat myself rapidly whittled away my patience.

It seems that when I yell, even if I’m not angry, it feeds back to my brain and suddenly I am angry.

I struggled with this for many years. I lost my temper, apologized, struggled to calm myself with “Mommy time-outs,” looked for parenting methods that would create incentives for answering instead of ignoring (but then sometimes I was punishing Lei because her hearing aid battery had died or her hearing aid wasn’t turned on).

And then, after what seemed like an eternity, Lei got her first implant. For the first few weeks after activation, she heard relatively little. They don’t turn the implant on full-blast right away. But over the next few months an amazing thing happened: I didn’t have to yell.

Well, I still yelled sometimes, because I’m a normal human mother. But I didn’t have to yell all the time for everything. Gradually Lei heard more and more. And she answered more and more.

How many of our family dinners, outings or movie nights ended early in a storm of anger and tears because of misunderstandings, failures to communicate and the frustration of trying to use visual communication with someone who always looked away? Countless … until the last few months.

Sometimes now we go whole weekends without a big blowup from anyone. It’s like living in a completely different family.

My husband said the other day that if he would have known what a big difference the CI would have made to our family, he would have wanted Lei to get one much earlier.

I don’t like playing the “coulda-woulda-shoulda” game, but I definitely know what he means. Even just one CI has made a huge difference for our family, and I can’t wait to see what a difference two will make.

I don’t regret waiting nine years, almost to the day, after getting her first hearing aids. I trust my daughter, and I’m grateful for everything.

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18 thoughts on “And I thought the cochlear implants were for her …

  1. That’s an amazing change. You capture the frustration of communicating visually with someone who won’t look at you so well. I can feel the emotions just remembering how awful I feel after we have an awful, horrible day, I calm down in the evening, go to check her batteries, and one or both are dead. Ugh. I hope that the second implant is just as amazing as the first.

    Liked by 1 person

    1. Katy, no one ever told me about this kind of thing in Lei’s early years. I feel like I have a responsibility to talk about it. It’s horrible looking around at the other parents and feeling like they have it all together while I’m a complete mess. At least now if you need a friend who is a mess, you’ve got me!

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  2. Here is an example of following the child’s lead. She grew up hard of hearing and was using her residual hearing perhaps more effectively than you think, depending on it more than visually. It was great that you included ASL in her repertoire, because it is a skill she might use later on with friends, with interpreters should she choose a college with that support, and if she chooses to work with deaf and hard of hearing people. But whether you use it at home with her, depends on her inclination which avenue of communication is more comfortable for her. The CI turns out to be a boon especially for individuals that have experienced hearing in the past, but it is not a cure nor a complete fix. There will still be times when communication breaks down and all available resources will be needed.

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    1. Dianrez, signing still plays a role for us whenever Lei is not using her processor. She hasn’t been much of a signer for years, but the fact that I can still communicate with her when she has no amplification continues to matter to me. Besides, at some point she may want to be more engaged with deaf peers who sign, and she will be able to build on the foundation she has now.

      Liked by 1 person

  3. It’s so refreshing to read another parent not only articulate the frustration of not being heard (my husband AND son are deaf), but also have such a realistic approach to total communication. My son is 3, he was implanted at 14 months old but with nerve damage and severely abnormal anatomy of his inner ear, it’s not likely that he’ll be able to articulate speech. It’s frustrating to me when people assume that because he has an implant he can hear. It’s a tool, one of many that we’ve tried to give him, but not a cure-as is commonly assumed.
    Your daughter sounds amazing and you have much to be proud of.

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    1. Mindy, my dad and husband both have mild to moderate hearing loss, too, related to age and noise exposure. I like to joke that someday I will write my memoir and call it “Yelling at Deaf People.” That’s what it feels like some days!

      I totally agree that the CI is a tool, not a cure. The benefits vary depending on a number of factors and even for those who hear well with it, there is no guarantee they will have clear speech. It’s just so individual, and frankly I think hearing culture places way too high a value on production of clear speech. Communication, by hook or crook, is the heart of the matter.

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  4. Amazing! Sounds like she will continue to do amazing! I am sure she was just as frustrated with the communication as you were – I was and still am being deaf and hard of hearing myself!

    I only wish C.I was more “popular” when I was a child. Left ear – completely deaf , right ear – severe -to-profound. My hearing did get worse and worse as a child then when I was about 12 it has been stable ever since. I first tried to get implants at age 11. Denied due to the fact that a) its free here in Canada and b) I function really well with a hearing aid in my right ear (getting A and B’s in a mainstream class etc.).

    10 years later – I received a C.I! I just had the implant surgery Jan 21st – activated last week – Feb 19! Today is one of my many follow up appointments. I am not recognizing sounds or anything yet but can already feel the difference with not having to turn my tv up as loud or the music.

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    1. That is so exciting, Stef! Little by little the sounds will get more recognizable. I think a lot of people outside the d/hoh world, including some hearing parents, don’t realize how much work it is to learn how to hear with a CI. It’s a process! Are you blogging? I’d love to follow your progress!

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  5. Great read! My daughter will be 5 and got her first implant 7 months ago, and the second 4 months ago, the part about yelling I can associate with. I do yell more so because she couldn’t hear for so long, or worse when she has her implants off. The comment amount yelling turning into anger, wow that is me. I am yelling because she can’t hear me, or she may just not understand me because she is still building her vocabulary and learning daily-but it them makes me angry.
    Thanks again for the insight and words-you are a great mom!

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  6. How bright my future is as my granddaughter and I build a world for ourselves as hopefully we start to have phone conversations and joint adventures during our not-often-enough visits. Thank you so much Juliet for bringing clarity to the past 10 years, Now, onward and upward. 😀

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