Sunday, May 8, 2011

Giving Someone Their Voice

"A voice is a human gift; it should be cherished and used...powerlessness and silence go together." -- Margaret Atwood

May is "Better Speech and Hearing Month".  Who knew?  Ten years ago, I had no idea.  Then I met Karen and the other miracle workers in her office and discovered the transformational world of speech and language pathology.  I often fantasize that if I had it to do over again, I would become an SLP (code for speech and language pathologist).  Until I met Karen, I was clueless.  I didn't realize that someone could actually exercise their mouth, tongue and lips to strengthen them so that the sounds that came though that larynx could be more recognizable.  I had no idea that it could be a vocation, a life's work, to give someone through hard hard work their voice.  But that is exactly what Karen does day in and day out.  Patience must be the cornerstone of every SLP because they measure their victories in the smallest of ways: a new sound, holding the bite stick 5 more seconds, jaw position, lip strength and an observation of growth no matter how slight.

Patrick met Karen at the ripe old age of two.  I was frustrated that he wasn't making more sounds, worried that he would never clearly be able to articulate his needs, and so, so curious about the thoughts behind those bright eyes.  Karen was unphased by Patrick's lack of speech.  She took him back to her tiny office and kept a two year old engaged in activities that seemed like playtime but were truly hard work.  He held pretzels between his lips, moved goldfish crackers on his tongue, blew out candles and worked on following directions.  Karen was warm and engaging.  She meant business and didn't fool around.  Every single session Patrick was working, he just didn't know it.  When Patrick was diagnosed with leukemia, the only person we continued to see was Karen.  She washed her hands and kept going.  The continuity of Karen, even when he was feeling horrible, was a comfort.  You see, Karen is fun!  She plays music, brings out the balloons, and makes you excited.  She is a detective.  She carefully watches and analyzes your growth.  She knows what makes you smile and how to encourage you in just the right way.  Just when you think you've figured Karen out, she changes it up and brings out a new game, a new idea or a creative new activity.  She pushes you and expects the most from you.  She usually gets it.

When Patrick was five, I was frustrated by his lack of real language.  His language had grown but he still couldn't say Jack clearly (it was "naa") or Mary Kate (she was "nis" for sissy).  Honestly, I just never thought it would happen.  Karen had her eye on the prize.  She knew the roadmap.  She followed it.  She was calm when she told me: "Beth, J and K are some of the very last sounds.  They are at the back of the throat. It will happen.  We are getting there." Her knowledge, natural curiosity and buddha-like patience became my inspiration.

I vividly remember the day Patrick could tell me that he had bagels for snack time in preschool.  I couldn't stop smiling.  He had bagels and he could tell me!!! Suddenly, I wasn't frozen out of knowing what happened during the time that I wasn't with Patrick.  He could give me some of the story.

Kindergarten came and went and we noticed a phenomena: the more that Patrick could read, the better his speech became.  The visual support of reading also became a support for his language.  It was wild.  It was like watching a mystery gift with seven different layers of wrapping paper get unwrapped one layer at a time.  Patrick's voice, his thoughts, his abstract ideas slowly started taking shape.  Listening to Patrick read out loud is still one of my greatest joys.  The many, many subskills involved in breaking the code of literacy as well as the many, many subskills of being able to clearly articulate the words together boggle my mind. It is breathtaking and miraculous that any of us can do it.  It's Olympian in its valor for people like Patrick.

Patrick has always loved music and performing and in third grade I decided to sign him up for a two week summer class that included a mini-performance of the Jungle Book at the end.  It was an edgy decision but I thought he would love it.  He did.  He took the script and read and reread it over and over at our house.  He sang the songs, practiced the dance moves and dreamed of his moment on stage.  When the time came and he took ahold of the microphone I held my breath.  God bless his addition to allowing him to sing his song she gave him free reign to make monkey sounds afterwards.  Of course, he complied with gusto!  "Oooo, oooo, eeee, eeee" never sounded so beautiful!

All I could think of was Karen.  Here he was, getting the opportunity to be on stage and perform when just a few years earlier he could barely be understood.  Her hard work, her expertise allowed his dream to come true.

This past fall, Patrick took his performing to a whole new level.  He had to audition by himself with a crew of other kids for a performance that would be a fusion of a kids class and a big university director bringing meaning to a gifted concert pianist's work.  It was based on the music from Peter Pan and Alice in Wonderland.  Unbelievably, he made the cut.  He was given a script and a boatload of songs to sing.  He had lines to say from the Jabberwocky poem and all of it seemed possible with Karen's help and guidance.  When the performance time came, I hoped he was ready but I wasn't sure.  I sat in the audience sweating and wishing and praying and hoping he would follow the directions, remember his lines and sing clearly.  As usual, he rose to the occasion.  At the fanciest performing center in our town, amid the patrons who pay big bucks to have season tickets, a little boy with Down Syndrome said his lines and made his point.  People like him have passions and enthusiasm and dreams too. People like Patrick have something important to say.  And with people like Karen behind him, words and thoughts take shape and dreams come true.  At the end of that performance there was one person waiting for an autograph...

and it should be, it should be, it should be like that...Karen is the reason Patrick is able to sing and perform and say his lines.  She gave Patrick his voice and there is not a day that goes by that I'm not grateful for that gift of grace: a boy's voice and a chance to dream out loud!  Thank you dear Karen!


  1. I am sending this to my sister because she just got accepted to Sac State for the Speech and Language Pathology grad program. This will inspire her so much. I love that there are so many people out there working hard to bring positivity to the world around them. Thank goodness for people like Karen!

    and thank goodness for Patrick's voice!

  2. It's so hard for me to sometimes remember how far Patrick has come, when you see what a vibrant, capable, full-of-life boy he is today. Thank God for wonderful souls like Karen! What a gift she has given to Patrick. I can't even imagine Patrick without his singing and performing:) Great post!