At the end of each school day, it is British custom for the teacher to escort each student to the doorway and to shake their hand. Today, instead of releasing Sonya to me so that she can enjoy her afternoon snack, her teacher gestured me closer.
“I think something may be wrong with the radio,” she said. “It happened during ballet.” Sonya looked up at me, her eyes wide with fear.
In these situations, I am great at acting calm. “Put your oxogen mask on first before helping others,” is a mantra I love. “Okay, I’ll take a look at the FM this afternoon,” I told her (FM = radio in British).
As we walked home Sonya grabbed my arm and started to cry. I was taken aback by her response. She was trying to tell me something, but was so upset she choked on her tears. “Mama, I can’t hear anything!” She said in between sobs. I’ll never forget the fear in her eyes at that moment.
I removed one CI from her ear and twisted off the rechargeable battery. These batteries have a limited shelf life. They typically last a few years depending on how frequently they are charged. Moving to a new country, having a baby, it was a lot, and I blame myself for not being more proactive to ensure her batteries weren’t getting too old. Frankly, I couldn’t even remember the last time I had them replaced, but there must have been a little juice left since I was able to restart the processor by twisting the battery back on. Just enough time to explain to Sonya that it would be okay.
Suddenly, a little girl from Sonya’s class came running down the sidewalk to us.
“Sonya! Sonya!” she cried. Her cheeks flushed as she explained to me what had happened that day. “Sonya was crying in ballet and she couldn’t hear!” Then, turning to Sonya, she said, “Don’t worry Sonya!” The sweet gesture of this little girl was beyond. Sonya (and I) tried to hold it together but we were both very moved by her friend’s concern. At home, I replaced the processors with a back-up pair of batteries and for the time being, normalcy returned.
NHS to the Rescue
The next morning, I went to the Royal National Ear Nose and Throat Hospital, where I was immediately given a new pair of batteries. The NHS is not an easy system to maneuver, and it’s not perfect, but I am beyond grateful for it! In the United States, I would have had to contact Cochlear USA for new batteries. I would be charged $250 per battery and they would likely overnight it. Here, I am given new batteries immediately and at no cost. Further, I was given an entire box of disposable batteries for free, which should last us two months should the rechargeable batteries fail again.
Clearly, Sonya’s teachers needed more education. At pick up, I discussed with Sonya’s head teacher that it was the battery, not the FM that failed. I showed her how to tell if the CI was working by looking at the light on top of the processor. “Green means good and yellow means not connected. No light means the processor is off.” Of course, we had gone through this earlier in the year, but clearly a refresher was necessary. We now keep an extra pair of batteries in the classroom should this happen again. At pick up every day I ask if anything came up hearing-wise that I should know about.
This experience also underscores how critical it is for Sonya to learn self advocacy skills. For her to be able to inform a teacher that her CI isn’t working, and to trouble shoot the technology herself is vital. This is not an easy task. Especially, given that we are in a community where resources for cochlear implants are limited and there are no other kids with hearing loss at Sonya’s school. I certainly miss our Group Therapy sessions at CHC.
That said, we can still help Sonya get there. I am working with Sonya’s teacher of the deaf (ToD) to identify ways to help Sonya fend for herself. Currently, Sonya is to give her FM system to her teacher (not for me to do); but we definitely need to do more.
If you have any tips on how your child learned to advocate for themselves I am all ears!