I Want You to Know Part 2

art 2 series in my personal story and in exploring advocacy.  This is a piece of a whole, a glimpse of stories that highlight the possibilities for others.  What do I advocate exactly?

Part 2 explores the experience of hearing and talking as a deaf child.  How speech therapists dealt with me and how life around me taught me better lessons than anything else.

If you haven’t yet, please read Part 1 first.

Life and Stuff

It was never predictable from day to day.  Back then, that used to bother me.  Today? It’s still unpredictable and I can handle it.  Sounds came to me faintly.  It was my eyes that took in the details and it was my hands that put across the needs and messages I gave.  I was the awkward child with long, tangled fingers.  The awkward child who never quite had the vocabulary to explain what I was hearing for those trying to understand and advocate for me.

It was frustrating.  I did hear, but was told that I missed out so much.  Sounds would either seem like so much white noise, or come to me faintly from a distance.  There would be spikes, an upward pitch of sound, then sudden dropping to a low-level roar.  Every single sound was interpreted by my brain as vibrations and feelings, so I learned to get by on the twinges and pops of my one singular ear that had any hearing left.

That also played into my speech patterns.

The Kid with Verbosity and Stubborn Streak

I had such vocabulary.  Words that felt like music to my heart.  I didn’t always know where they went in a sentence or what they meant entirely in the huge context of things.  My biggest frustration was that I couldn’t hear all the sounds or emphasis that made up complex words I enjoyed using in writing.  So, my pronunciation was often viewed as cutesy and funny.  I knew how to spell them quickly and with confidence, but I just couldn’t say them out loud.

Over the years, it cemented into a stubborn streak.  I stopped talking for speech therapists.  Or I would engage them into irrelevant conversations and throw fits if they corrected me.  I’d keep my voice low and soft, after being told by others how loud and high-pitched I was.  I refused to speak up louder for my therapists.  So, it became sessions of refuge from classrooms, with no real improvement on my speech.  They had to get really sneaky with me.

They’d bring me books to read out loud, which I often sidetracked into a conversation on a single sentence.  They’d get me to sign out the words on which sounds I sucked at (s, sh, ch, j, and z), and then say them.  They’d play around with vibrations, touch-the-throat, press face against table and touching while talking.

The biggest break-through for me was deepening my voice.  I could feel every sound in my throat, in my teeth, in my gums.  I also began to notice lip patterns and shapes in lip-reading that most people wouldn’t notice.  Or if they did, they had no words for how to describe what they could see.  I watched their throat constrict on certain words, watched their tongue expand behind their teeth, and the placement of their teeth.  I heard how certain sound carried and took into context for the sounds I couldn’t quite hear fully.  Imitation and passive observation became my best teacher, so my therapists worked with that a lot more.

Advocates Were Also Students

The environment we live in, the people who interact with us, the life that goes on around us — the full utilizing of all of these experiences is what teaches a child to communicate with others.  So, therapists were also students in observing the varied ways children with speech impediment and hearing loss took in their world.  Deaf children imitate their world, learn from their world, and were far more receptive of feelings.  The external feelings of their loved ones – texture and smells and vibrations – as well as the internal feelings that we process everyday.

I can tell you honestly that none of us are ever done learning.  What seems like nothing is improving, a lot is going on under the surface that you cannot see.  You can’t rate or grade these things.  You can only hope to learn from them as much as they are learning from you.

Onward To The End

That’s the end of Part Two.  Part Three will discuss the culmination of those experiences and what we should truly advocate for in our deaf/hh/implanted children.

Discussion: What were your experiences as a parent or as a deaf individual with speech therapists, audiologists, and communication with the world in general?  What do you think should be improved upon?

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I Want You To Know Part 1

hat you’re about to read is a personal story of hearing loss and advocacy.  This is a study of being an advocate through the lens of a story.  It is an observation of having the experience of advocates who were on my side through-out my life.

This is my story — raw and unrefined, and as true as I can remember it.  Consider this installment a foreword.

The Shining Example of Advocacy

I know my story, all too well.  I tell it as if it happened to someone else.  Even so, it takes a lot out of me to the point where I realize it’s going to impact someone every time I tell it, even myself, that I’m left shaking when I’m done.  It is an emotionally draining process, remembering each detail given to me by my family and pieced together as I grew older.

When I started this Heart to Ear project, I knew it was inevitable.  This story would come out in pieces of posts addressing different topics.  That’s how I visualized it happening.  I’m a dreamer with limited imagination.

It was during a brief moment of quiet, on an interstate, during a very long trip that an idea sparked.  It came in this form of inspiration:

My dear children, I write this to you so that you will not sin. But if anybody does sin, we have an advocate with the Father—Jesus Christ, the Righteous One.
– 1 John 2:1 {emphasis mine}

This was a study of how many Names God was known by.  One of them was Advocate.  Advocate has two important ideas of what the name means.  First, it is an act; the act of supporting, defending, protecting, getting someone else’s voice heard, and standing up for their humanity and rights.  Second, it is a person who does the pleading on someone else’s behalf and supports the choices someone else makes.

Christ has interceded for us.  I know this is in reference to the washing of sins, but His intercession was also for how we could live our life to the fullest in the Father’s glory (John 10:10).  When I thought of it, somewhat groggily as it was a darn long trip, I reminisced on all the advocates of my life.

The Procession of Advocacy

There they were.  Hearing interpreters; my friends who made sure I understood what was going on in a group of people chatting; the people who went through the process of learning about cochlear implant with me; my family members; and so many more.

The ultimate, though, is my grandmother.  She fought long and hard; for custody of me, for appropriate interpreters in classes for me, for my health, for my communication (she believed in both sign language and verbal speech), in those long hours of driving to be tested for cochlear implant, for my driver’s license, and ultimately, defended my freedom.

I recall my youngest aunt doing the same for me, in many ways, in far more unique and subtle ways that she often became the loud, assertive voice for my safety and happiness.  When, at times, I perceived my family members to be cold (in my young, uncertain mind), my aunt was steadfast and understanding.

Whatever else my grandmother and my aunt may be to anyone, to me they showed expressly what it is follow Christ’s example.  To take someone you love out of the deep dark that came in the aftershock of the death of a daughter and a sister.

What follows is my story.  It is the story of losses in many ways and a story of gains in many ways.  It is the story my spirit whispers on a daily basis, the story that God has refined me through fire to take me to this place in life, and further fires await me still.

Part 2 is here!