Total silence: When cochlear implants fail

This time of year is full of anniversaries. Exactly 10 years ago, as Hurricane Katrina devastated the city of New Orleans, my girl Lei was first diagnosed with moderate-to-severe hearing loss. Lei got her first CI in early October last year. And next year at this time we’ll remember that just after Labor Day, 2015, her left implant failed. Then her right implant.

That’s right. Lei now has no working CIs. 

Last Thursday she complained that her left ear was giving her a lot of static. So I did all the troubleshooting one does with a CI: swapping out parts, then when that didn’t help, I tried the backup processor.

“No change,” she told me.

Friday afternoon I took her to the implant audiologist who confirmed my fear. The problem is with her left implant.

Saturday, wearing her waterproof right processor because of the morning’s pouring rain, Lei marched in her first parade as a JROTC cadet. My husband leads that program and it was a very proud day for us. Sunday was their second parade together. After she got home Sunday, Lei said her regular processor (not the waterproof one) was cutting in and out a lot. She said the same had happened a couple of times the previous day. With the other processors.

If it’s an equipment problem, it should only happen with one processor, not both.

Today I took her in to see the audiologist again. The cutting in and out was happening about every three to five seconds. The audiologist tested all the equipment and all the programs, but couldn’t fix it.

Looks like the right implant is on the fritz, too.

So we will be meeting with the clinical team a week from today to see if they can fix it or if Lei will need to have surgery to replace the implants.

That’s a week she’ll go without any amplification. Fortunately she understands my signing, but (and this is no great reflection on my signing) other people’s signing is a complete mystery to her. So an interpreter won’t do (she insists).

We have to figure out what we’re going to do about her school. I hate for her to miss because she has no communication access at school. Lei is understandably upset at being cast into total silence. She can’t understand her friends talking to her at all. She said she feels like she’s in a bubble where no sound can reach her.

I’ll post more after next week, but it seems that my family is once again receiving the gift of a character builder. Wish us luck along the way.

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13 thoughts on “Total silence: When cochlear implants fail

  1. So sorry… Isn’t your daughter around middle school age? I was an interpreter in a middle school until a couple of years ago. I totally get why she would NOT want one. However, there’s the problem of her accessing her friends and classes while the CIs are out of commission. Deaf Culture to the rescue! There is a free app called Dragon Dictation. Android and iPhone. She can get her friends to speak into their phones what they’d like to say to her. I say their phones because the voice to text software works best when it can “learn” the voice. If friends don’t have phones, your daughter’s will do. They’ll probably think the mistakes and misspellings are funny. She will be instantly immensely popular. If your school does not allow phones on campus, you could push for your daughter to have hers for accommodation purposes. She will need to be able to communicate with random teachers and administrators in the hall. And, the lunch lady. What if there’s an emergency and she needs to understand instructions? At my school in the case of a lock down, teachers were to open their class doors and pull any students on the way back to class from the bathroom (roaming the halls) into their classrooms and lock the doors. You don’t want her anxiety upped because she is suddenly in an unfamiliar teacher’s room and can’t understand what is going on. ADA and 504 apply to public schools. If you need help, inbox me. Meanwhile for class, the school could contract with a company that does remote CART services. Nobody new in the classroom, your daughter just opens a laptop and reads what’s being said in class. Bonus, the transcript can also be printed out for notes. That way, she doesn’t have to look away from the screen, what her teacher is pointing at, or the science demonstration to write her own notes. Also an accommodation pursuable through the ADA and 504. You probably know this, but a student does not need an IEP to get an accommodation. The laws apply to kids as well as adults.

    I said “Deaf Culture to the rescue!” You’re probably wondering why. The culture definition that I think applies best to Deaf Culture is this- a set of collectively and historically accumulated tried and true ways for negotiating the local landscape that is shared and passed down through generations. If there is one thing true about d/Deaf people who have access to each other and older generations, they are well aware of the hearing world around them. It’s a hearing world. Knowing how to negotiate a hearing landscape is important for success and therefore a large part of the Deaf cultural body of knowledge. Weird, but that information is not accessed or even acknowledged by SLPs and teachers of the deaf in public schools. They only teach speech, not what to do if you can’t understand what people are saying to you or they can’t understand you. Additionally, the information above would certainly not be shared with you from any school employee. Are you kidding? That stuff costs money. And, rules are rules. Even though your daughter has had great success accessing sound through her CIs, when they’re not working she is deaf. Even if its only for a couple of weeks. Glad to share the bit I know. That’s the great thing about Deaf Culture, when each one contributes, all boats rise.

    As for sign language, she might be interested in taking ASL classes at some point. You could entice her by saying that natural languages, spoken and signed, just like numbers, are discrete combinatorial systems (get her to look that up! ha!) Additionally, linguists recognize that ASL is one of the most highly inflected languages on the planet. Its right up there with Navajo and Bantu. Ex: In most ASL sentences, the subject and the object must agree with the verb. However, the agreement does not reflect gender or tense. Woah!!! Mind blown! I figure, if I read her right, if something is hard for most people to learn it is much more enticing. Smile! She could get college credit for ASL. The University of Georgia (top tier research university) has a booming 4 semester ASL program with 3 Deaf professors.

    I hope some of this information will be useful to you! Thanks for sharing your experiences through your blog… and best wishes to your daughter and your family. She will be alright.

    Nancy

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    1. Nancy these are very helpful suggestions. Thank you for taking time to comment at length! Even just challenging Lei to take a notebook to school especially for note-writing during recess or lunch made a big difference in her confidence. It is important to me that she come through this experience empowered, not feeling like she can’t function at all without hearing. So thank you again for sharing your thoughts.

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  2. Any chance you can quickly get CART in place for her??? It would provide a measure of access so she didn’t have to miss all educational information.

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      1. Yay, but “working on it” is not really providing access. Do they need something (like filing a civil rights violation complaint) to speed things along? With her reading abilities, it seems like CART would provide access, be less obtrusive than an interpreter (this coming from an interpreter with a gifted 4th grader who refuses to use an interpreter), and could be in place quickly so she could be a part of her classroom experience.

        Great insight, also, from the above poster. Thank goodness for community!

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  3. If this happens again, have the school bring in a captioner. They will write everything being said on a stenograph and steam it live to her laptop or device for her to be aware of everything going on around her. They’ll get everything said and they’ll also get what’s going on in the room. A knock on the door, laughing, a student’s cell phone going off. They help make the hard of hearing client aware of everything going on around them. Contact me if you would like more info on that.

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    1. Hi, Sarah! We did try earnestly to get a real live captioner into the classroom, but it wasn’t meant to be. That would be ideal for my daughter, but our school district just won’t pay for it. We also tried the captioning software … total non-starter.

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