Is this a breakdown?

I keep wondering if this is what we’ll someday call a breakdown.

Someday maybe we will tell this story by saying that Lei kept having really hard years at school, that we kept trying new things, new interventions, new schools, but we couldn’t seem to find the right fit. And then we’ll talk about how we were so hopeful that attending her dad’s school would give her the security, academic challenges and sense of belonging she lacked. And how, just after she started there, she suffered a breakdown. 

Maybe this isn't a breakdown. Maybe it's an epic adventure.
Maybe this isn’t a breakdown. Maybe it’s an epic adventure.

Over the last three weeks, we have tried to figure out what on earth is preventing Lei from hearing with her cochlear implants. Is it the external equipment? No. Is it the internal implants? Apparently not. Integrity testing says they are working just fine. Is it her auditory nerve? No, that is responding exactly as it should. Every possible cause has been ruled out.

Except she still couldn’t hear.

Now the ear surgeon we respect greatly has weighed in. She says that Lei’s inability to hear is psychological. Along with her ears, her CIs and her brain, this problem is “in her head.”

You may recall that over the summer Lei’s dad and I agonized about where or if we should send her to school. We had decided to homeschool, but then in August I had a strong gut feeling that she should at least try her dad’s school.

Things were going well at first, but the days were extremely long because she arrived before anyone else in the morning and left with her dad after JROTC workouts and anything else he had to take care of before coming home. It was intense and she was exhausted. Then the first weekend after she started, she had parades both days. That was the context for her implants mysteriously both failing at the same time.

The ear surgeon said the odds are basically zero that both implants would fail at the same time without evidence to suggest a cause. They ruled out an autoimmune problem that might be causing the failure. She couldn’t find any other possible explanation, so she said it must be psychogenic.

The American Heritage Medical Dictionary defines psychogenic or functional deafness as “Hearing loss or impairment caused by a mental or emotional disorder or trauma and having no evidence of an organic cause.”

We know Lei has experienced a recent trauma. We know she has yet to fully process what happened when she was in fifth grade at the school (un)affectionately known as the Hippy Dippy Palace. So yes, that this could have been caused by the after-effects of trauma is definitely plausible.

And in the last few days, as I’ve talked with Lei about it, she has confirmed that she is feeling intense anxiety about going to school. The worst trigger, she says, is the noisy environments like the lunch room and gymnasium. She said she feels like she has bitten off more noise than her brain can “chew,” and it makes her shut down and not want to hear anything at all.

Lei dearly wants to be homeschooled, and believe me when I say that I feel the urge to rush in and rescue her from this. But as her dad and I have consulted together and with her, I’ve begun to reflect that this is a really important turning point for Lei. Right now she has a chance to stay in school with a lot of support, in an environment where many of the kids and all of the teachers and staff are firmly on her side to begin with. Most of the adults at the school have known Lei since she was two. They claim her as part of their community in a way that is unlikely to happen at any other school. My husband’s ROTC cadets look up to him like a father. That makes Lei family to them, and in a predominantly Mexican-American school, that means they will stick by her and defend her if she needs it.

Where else will she find this kind of school atmosphere? I think if we let her quit now, she will fully embrace her sense of fragility. But if she can overcome, it will give her the biggest boost of her young life.

One of the tools I’m using to get through this – because it’s easy for me to get swamped by my own worries, grief and fear – is the online game, SuperBetter. If you haven’t heard of this game, I highly recommend you go check it out. Life is full of challenges, right? SuperBetter lets you treat them the way you would play any online game. In order to reach your big goal – or “epic win” – you need to find allies, go on quests, activate power-ups and avoid bad guys.

So my goal is to reduce my own stress in order to support Lei to heal and hear again. I’ve always struggled with self-care, but SuperBetter makes it fun and much easier.

What’s more, this is a great way to think about Lei’s challenges. She and I are working on identifying her allies, what power-ups will reduce anxiety, what quests are going to help her succeed socially and what are the triggers (bad guys) she needs to avoid.

This is definitely another in along line of crises. But maybe in years to come we won’t call it a breakdown. Maybe we will someday look back at this and call it Lei’s Epic Middle School Adventure.

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8 thoughts on “Is this a breakdown?

  1. Thinking of you both with admiration. A tough road for certain. I am 55 and am looking forward to investigating your resource as I plan some of my new ventures. Wouldn’t want to relive middle school again. Glad she is open about her own feelings. The nice thing is that you do have options that you have researched. A few very supportive people in a person’s life can make a difference. She might also benefit from more connection to other teens with deafness/CIs. . I’m new to your blog and she may already have this in her life. A subscription to the publication Hearing Our Way is also a great idea. The case of psychogenic loss that I was involved with actually took months to resolve, and tis young man was involved to the point of needing residential treatment. I doubt that is the same for your daughter, but please know it might take time.
    FYI, I am a hearing professional and did not see it as psychogenic at first. It was a long time before the age of so many non-behavioral measures of hearing function.

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    1. Hi, Eileen, and thank you for sharing your experience! I do realize that it will take time for Lei to be able to hear again, and I don’t know really what the future holds. But I am hopeful she will be able to gradually overcome. Lei does have friends who she sees infrequently who also have CIs. It’s hard living in a big city and coordinating things with school schedules, etc. But you’re right, it is nice to feel like one isn’t alone.

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  2. I just want to thank you for sharing Lei’s story and struggles with such honesty. We are struggling with our 5 year old son with hearing loss- also has sensory issues, emotion/behavior regulation issues… it is never easy.

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    1. Christine, you are the reason I write this blog! When Lei was little, I kept looking around and wondering why she didn’t seem like the rest of the deaf kids. I hope you’ll find information and hope for the future here. Please let me know if you find resources that are helpful so I can add them to the resource page!

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  3. Sending out prayers for Lei and you. Your story, and her’s, makes me very attuned to things in my own daughter and not letting them get brushed off as “just normal kid stuff” when my gut says something else is up. I would rather seem pushy now than fighting six years from now because of a “wait and see” approach. W&S didn’t work for sensory stuff or social stuff, so it probably won’t work for school stuff.

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  4. I am a middle school teacher. I am deaf and wear 2 cochlear implants. I feel for Lei. I have so many friends who look back at middle school struggles and wish they could give their kids what they needed…it’s a huge regret for them. Is it quitting if Lei takes a break and does online school to finish the year? My heart tells me to implore you to listen to Lei. You have no idea what this feels like…the noise is overwhelming…it’s maddening at times and her body is screaming for a break. Please consider this.

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    1. Hi, Lisa, thanks for sharing your thoughts. We are working on making accommodations that will cut down on the overstimulating noise and give Lei chances to rest throughout the day. And we will continue to work with the implant audiologist to make sure Lei has programs that are set very low for times that she has to be in loud environments. I want her to receive the benefits of direct instruction by highly skilled teachers (instead of her totally-not-a-teacher mom), be part of a school community that offers both friendship and areas for growth instead of social isolation at home (because I have my own freelance work to do and I cannot provide her with a socially rich homeschool environment), and the support of a team that includes professionals and her parents. No, I don’t know what it feels like for her, but I can listen to her and respond thoughtfully instead of rushing in to make it all better for her by yanking her out. We all wish we could do things differently – except for when we did really well. And that is what we want for Lei. We want her to emerge triumphant. Tell me how taking her out of school, essentially telling her that all hope is lost, achieves that.

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