(Photo: Ray J. Sanduski, Nashville, TN)
It was the best Spring afternoon. My daughter, newly implanted, nearing three years of age, learning to use her words and hearing! Yes, Lexi is deaf, but she can hear!
We were playing while her big brother had baseball practice and I can still remember it to this day. Lexi and her little buddy running down the small hill, laughing and giggling without a care in the world. Then, it was like someone grabbed their ankles. They face-planted onto the ground and there they flew....Lexi's cochlear implant processors flying high in the sky as if it were all in slow motion.
Suddenly, her sweet little buddy looked at the "ears" laying in the grass, then quickly glanced back at Lexi with a very perplexed look on his face and said "What dat?"
Lexi quickly looked at me with eyes as wide as saucers, then looked at him, then looked back at me as if she were asking for help from a sinking ship!
This was the first moment I recall when I had a choice. I could rescue Lexi or LEAD Lexi. So, I gave her a gentle nod with a calming smile and said "Tell him. Tell him what they are, Lexi."
Before you read Lexi's response, first know her Audiologist's name is Cathi Hayes and Lexi referred to her as "Dr. Caffi."
Lexi took a little breath and as they both started to get up, she looked at the boy and said "Caffi do dat."
I remember feeling so proud. So excited. She had been prepped and prepped by some amazing people, therapists and Audiologists for this day. She was prepped to be who she is. To be different. To be okay with being different and unique. Lexi had the confidence and tools to be who she was made to be....to be LEXI. A beautiful little girl who happens to have bionic hearing. She was already confident in telling the world "I am who I am...Caffi do dat."
Since its inception in 2011, since Lexi went from deafness to sound in 2010, I've had the pleasure of meeting so many lovely human beings who are deaf, yet they hear. I've had both the pleasure and the pain of watching my child live "somewhere in between" in just about every environment.
What do I mean "somewhere in between"? Lexi and all her deaf/HOH peers who choose technology are hearing. But they're deaf. But they hear. But they don't. I know it sounds like a cat and mouse game when I say it like that, but when you live it, that's exactly what it feels like in most social, academic or athletic environments. I remember a long time ago, I read an article written by an adult cochlear implant recipient. He referred to it so simply: "I'm not hearing, I'm not deaf...I'm Bionic."
As the parent of a small child embarking on her cochlear implant journey many years ago, gosh that stuck with me. I think it provides a simple reminder that when you're deaf or hard of hearing with cochlear implants, hearing aids or Baha technology, you are both hearing and still have hearing loss. You experience a world many of us don't. The pain and heartache of what it's like to live without sound. Without I love you's. Without giggles. Without the whisper of a spouse. You get to turn it all off when the world is too noisy. You get to know what a small deaf child in a small, underserved country like Jamaica experiences every single day. You get to experience far more compassion than any of us could for those who don't have technology or access to these amazing devices.
At the same time, you're hearing. You get to live in a world full of music. Your world is filled with laughter, with I love you's...and the whispers? You can have as many as you want.
But there's also a place in between that most people don't think about for those who are BIONIC. There's a place and a time each and every day when they might feel alone. I know this because I witness it in my own child. Oh Lex. She wouldn't admit this. She's very proud like her dad. However, I'm her mom. I see it. There have been times when I've caught glimpses of "I don't really know where I fit in in this environment". Environments such as swimming or the classroom. In the classroom, people speak quickly. Many children can talk at once. In the classroom, a teacher can turn her back on you and continue talking and teaching. In the classroom, research shows kids like Lexi still only hear 7 out of 10 words. The small stuff falls off.
Or there's athletics. This is a tough, tough time for bionic folks. Whether it's practice or the game, when the coach's face is too far to see, I've seen Lexi start late at the sprinting starting line because she can't see the coach's face when they say "go". I've seen her struggle to hear her coach in the basketball game because she's too far to hear the play. The most difficult? When she's confused for a minute because she's so overwhelmed by so many sounds she's trying to differentiate. Or not hearing the ref say "white's ball" (team with white jersey on) and she runs to the opposite end of the court. At the same time, she's a great athlete, so it stands out even more when she's missing out because it's not really characteristic of her natural athletic abilities.
How about social? What about the times at the slumber party when a bionic kiddo is just zapped from all the mental fatigue? They take their ears off and just need a moment, begin getting super sleepy while all their friends are still laughing, playing and dancing.
For adults -- all of the above is true. Watching TV with the spouse, they are bionic. In a crowded restaurant struggling to hear the conversation, this shows the bionic identity.
I founded, I manage, I direct, I come up with all of our programs here at Songs for Sound. But this is very, very important to me. I'm working with my team to launch a BEING BIONIC SERIES. This is a series of tips and tools to help those with hearing technology to be their best in every environment, to empathize with every day situations and times you may feel somewhere in between, and to continue to create such awareness around hearing loss and deafness, that maybe we can really and truly blur the lines. We all have different hearing LEVELS. Many of us will at some point join our crazy bionic family. Age, noise, many factors will contribute.
SO KICKING IT OFF TODAY, I'm asking LEXI her opinion on how YOU or your CHILD can handle different scenarios and also shed some light on how she/her peers might feel when BEING BIONIC:
Lexi Vernon, 10 yrs old, Cochlear Nucleus system. (Freedom Implant, N6 Processor)
Lexi attends CPA, a private/prep school in Nashville, plays for the TN Mojo 07 Fastpitch team and plays basketball for the CPA Lions. She is also on the swim team in the Summer, takes dance and is an excellent student.
1. Lexi, what would you tell kids to do when your in a classroom and you don't understand something a teacher says (the vocabulary is confusing or you didn't quite hear the teacher)? How does that make you feel?
LEXI: hand signals. Come up with a secret hand signal. I give my teacher a little sign I don't understand what she is saying with the tap of my two fingers. Or she uses a word I don't know because I have a small vocab delay; I simply tap my fingers. That keeps me from being embarrassed and asking often. I don't like to draw attention to myself in the classroom.
I don't feel bad anymore, but I'd rather blend in.
Next, every teacher should have a Roger Sound Tower (Dynamo SoundField). It is THE BEST!
I hear so well with this tower! It's great for the teacher and all the kids appreciate it.
2. Lexi, when a coach is yelling at you and you didn't HEAR them, what should you or your peers do or say? How does that make you feel?
Lexi: Well, it does make me feel weird, but I know they just expect a lot out of me. They forget I'm deaf because I hear & talk. So, hand signals would help a lot. Also, if they would repeat what they say more than once. Using the mini mic helps if I'm not too far away, too.
3. Lexi, tell me what it feels like when you change your equipment (batteries/use the mini mic) in front of your teammates?
Lexi: I'm used to it mostly. My friends are used to it, so honestly, it doesn't bother me too much. I would tell other kids just to get used to it and pick good friends & teammates like I have.
4. What are the most difficult things for you in a basketball game? In your softball game?
Lexi: Coaches think I'm confused or don't know what I'm doing every now and then. I don't get confused in games because I'm confused. It's because I'm thinking about hearing first, then listening, and THEN I get to think about what the information means. It just takes me a little more time sometimes. Hand signals help a lot to get me the info quickly!
5. Finally, LEXI, what is your favorite thing about being both deaf and hearing...being BIONIC? What's the most difficult thing?
LEXI: Are you kidding me? I get to sleep soooooo soundly. I don't hear anyone snoring. I sleep such a deep sleep. AND then, I get to turn on my ears and hear my favorite thing...MUSIC. I love hearing songs and music and dancing. I love hearing my friends at school or on my team. I cannot think of anything I don't love to hear. If you need cochlear implants or hearing aids. DO IT. It's the best thing you could do for yourself!