Feel My Song

 

I walk into Elise’s room and find her awake in her bed, patiently awaiting her next encounter with a human being.  Her world is an endless string of moments glued together by her anticipation of personal interaction.  As I approach her bed, careful not to make my presence known, I lean down within inches of her.  My heart is immediately filled as she lifts her right hand, searching for my face, a special connection that serves as Elise’s one and only link to the outside world.  

This act of reaching out to others began when Elise was about 3-years-old.  Children like her live in a vastly different universe than the rest of us.  Her world is limited to a very small perimeter around her body.  She cannot get from here to there on her own, or use her senses of sight, hearing, or touch to explore her surroundings in a normal manner.  It took us a while to figure this out fully, but when we did, we began to understand Elise in a more personal way.  We started getting in her face, letting her feel our skin against hers.  She likes to be kissed all over, hugged tightly, and drawn close.  As we continued to meet Elise in her space, she began to reach out into ours.  

Over the years, living as a deaf/blind child, Elise has developed what we call her “sixth sense”.  Only recently has she shown an awareness of someone’s presence by the mere feeling she gets when her space is filled with a person other than herself.  I test this newfound talent by carefully moving near to her without touching her.  I even go as far as holding my breath, knowing her heightened senses will pick up any sign of life.  More times than not, she finds me, eager to search my face and gift me with a smile.  This has been so awesome to experience, and a welcome advancement in her abilities.  Until recently, she had always needed some clue to let her know to reach out.  Only after being picked up, kissed on, rocked, or played with, did the door open for Elise to search for who was with her.  

For me as her mother, this simple gesture is her way of turning a pain into a pleasure.  It hurts not to talk to her or have her see me or know me, but this is a wonderful substitute.  All parents know the joy that comes from receiving a hug, a kiss, or words of affection from their child.   God has imparted on me that same delight when Elise brings her hand to my face to feel me, to “see” me, to know me, and to love me.  Often, the endearing efforts that I receive from my boys are strongly encouraged.  The fact that Elise’s show of affection is purely intentional and completely self-motivated, gives it even more merit than the loss of her kisses and hugs.  

“Oh, she’s like Helen Keller!”  

If I had a nickel for every time I have heard that phrase, well… I’d have a lot of nickels.  I’ve heard it in elevators, waiting rooms, parking lots, church, the mall, restaurants, you name it!  Each time a well-meaning person says this to me, my first thought is, “I wish!”.  Unfortunately, Elise has very little in common with Helen Keller. She was blind, and so is Elise.  She was deaf, and so is Elise.  That is where their likenesses end, and their traits diverge--taking on very different paths.  Where Elise was stricken with a severe brain injury before birth, Helen Keller had a normal-forming brain that was capable of higher thought processes, understanding of the world around her, communication techniques, and, above all else, the creation of meaningful thought.  She was a gifted and thought-provoking woman.  Elise isn’t just deaf/blind, but suffers as well from immense cognitive impairment, leaving her to function much like a young baby.  

One day last year, I ran across a video of Helen Keller.  It was later in her life, and she was sitting with her companion, Anne Sullivan.  Anne explains, with Helen’s help, how she learned to use her hand upon the face of another to feel the vibrations of sounds, and in turn, make them herself.  As inspiring as this was to see, it was well beyond Elise’s capabilities.  However, watching Helen place her hand to Anne’s face showed me that she and Elise, in fact, do have something else in common.  They share the ability to “see” and “hear” others with the mere use of their hand. 

There are a myriad of communication devices for deaf/blind kids and adults to use.  We have spent years searching for the perfect fit for Elise.  All of our efforts have been met with disappointment.  It has become painfully obvious that Elise’s communication will most likely always be limited—crying, laughing, screaming, grunting, and giggling.  Only a few of the people in her life know what each of these sounds mean, reading the frequency, pitch, and volume like you would decipher another child’s words and sentences.  It works for us, and it works for her.  We are satisfied with this system, basic as it is. The truth is, in Elise’s world, communication isn’t nearly as important as connection. 

When Elise was 2-years-old, she was able to take advantage of using a cochlear implant.  It is a surgically implanted electronic device that is used to provide a sense of sound to a person who is profoundly deaf or severely hard of hearing.  At least that is the clinical definition of it. Elise’s implant has provided her with a sense of sound that we don’t completely understand.  Her implant did not do for her what it is intended to do for other normally developing individuals.  She does not use it for communication or speech, and it has not given her a normal understanding of the world around her.  It has, though, enhanced her interest in what she is trying to attend to.  If it is a vibrating musical toy, she plays with it longer.  If it is the voice of someone singing a song, she will hold her hand to their face longer.   In my mind, it mainly serves as something that strengthens the connection she feels between herself and her immediate environment.  The cochlear is not always welcomed by Elise, and she knows all too well how to knock it off of her head.  Smarty pants! 

Elise used to spend a large amount of her time without her cochlear on.  She would wear it at school as much as possible and during therapy sessions at home.  Other than that, she would prefer to be without it.  I tried for years to “convince” her to wear it for listening to music at church or on a Cd, or while traveling in the car.  Since we don’t know what she is actually “hearing”, I couldn't blame her for preferring the comfort of silence.  

UPDATE 2017:  Elise has made huge strides in how much she wants to utilize her cochlear.  She now LOVES listening to music.  We set up an ALEXA on the headboard of her bed, and it plays music for her day and night.  She listens intently in a way that she never would before.  We have no idea what made her change in this way, but we are so thankful for her newfound enjoyment of music that doesn't come from a person or a toy.  Elise has also begun wanting her cochlear on for much more of the day.  She definitely knows how to take it off by rubbing her head against her pillow, headrest, or other surface she is resting on at the time.  This action itself is a great form of communication!  Overall, though, we have seen a huge growth in how much Elise wants to hear the world around her.  

This just goes to show that it can take YEARS to see changes and growth in kids like Elise.  It is important that we, as parents, teachers, therapists, and doctors, should never assume a child has hit a place of no more growth!  It may just take a LONG while to get there :)

With her cochlear off, Elise uses her hand as her eyes and her ears.  With her cochlear on, she still insists on the touch of her hand as a substitute for vision.  It is not enough for her to receive some version of the sound of my voice through the cochlear, she still holds the desire to feel the vibrations and movement of my mouth and jaw.  Just as Helen Keller learned to use this form of connecting to communicate, Elise is happy to just connect.  

The pathway between Elise and the rest of the world may be broken, but she has found a way, even in her limited abilities, to bridge that gap.  I am always searching for just “who” Elise is.  Helen Keller, she is not.  She may not be able to learn speech or form words.  She will never read braille, use sign language, or certain technology for communicating.   Despite these barriers, she does possess a spirit similar to Helen.  She craves human interaction, and does what she can to gain it.   Elise uses what little she has to the fullest of her ability, and for that, I am proud.  That’s all I can ask from my baby girl.

(At the bottom of this post, I have included a video showing Elise demonstrating this connection that she so desires.)

     Photo from the Helen Keller Photographic Collection

Helen Keller with her friend Eleanor Roosevelt in 1959 / Elise and Mama sharing a song.

It’s incredible to see a picture of Helen Keller using her hands in the way Elise does to “see” someone.  Especially because we were told she wouldn’t have enough brain power to do much of anything.  

                               Photo from the Helen Keller Photographic Collection

Helen Keller with President Eisenhower, 1955

It looks awkward for the other person, but I haven't met a person yet who can resist Elise's searching hand!  

Elise with her teacher, D’Layne.  She puts her hand out at the very first clue that D’Layne is near.   

 Elise and GiGi when she was about 4-years-old.  Her eyes never meet your gaze (even if it looks like it in pictures), but she makes sure to find your mouth.  She focuses on the mouth and jaw area because she feels the vibrations and movement as we talk/sing.  

(photo via George Brown College)

This is one way that deaf/blind people talk to each other.  They use hand signs within the other person's palms.    Helen Keller did use this form of communication.  

photo taken from www.theinterpretersfriend.org/db/rsorcs.html#dbc

This is a photo of two deaf/blind men using the same technique to connect and possibly communicate with each other.   

I wanted to share a video that I took of Elise and me in her hospital bed during a stay several weeks ago.  If you turn up your speakers and listen closely, you can hear her give a little hum when I pause in my singing.  It is a game we play.  I sing a verse, pause, and wait for her to make her humming noise which is her way of saying “more”.  You will see me wait a few times for her to also touch my face again to complete the request.  This is the only sound or gesture Elise has ever used other than laughing/crying that means something.  I absolutely adore it!

(Halfway through, the video turns upside down.  My fault...)