Monday, June 1, 2015

Cheer Up, Charlie

Ronan's been on a Willy Wonka kick for a few months now.  He'll watch certain scenes in the movie or listen to a particular lyric of one of the songs over and over again.  Some people would call that sort of behavior a stim; I'm calling it insight.  

I'm calling it insight because last week, after I had a tough day, I heard Ronan play a song on the iPad.  It was a song from the Willy Wonka movie but one that Ronan doesn't listen to very often.  In the past when he's chosen this song, I've noticed he's played it on a day that has seen some sort of struggle - either a physical struggle due to his leg issues, or a struggle that he and I have had due to some unfortunate miscommunication.  

Ronan is non-verbal.  Communication is something we are constantly working on.  We are also constantly praying that communication will improve - not just Ronan's communication skills, but our own as well. 

Ronan wasn't always non-verbal.  His ability to speak slowly disappeared the sicker he got.  Words he'd been able to say were replaced with silence.  Silence was replaced with negative behaviors. But those behaviors were were actually responses, responses of Ronan not being able to talk or to communicate with us.  

I've longed to hear Ronan's husky voice return.  He tries to talk, but most of the verbal attempts he makes come out garbled.  Ronan has eleven functional words now, but 11 words used sporadically do not make for smooth communication.  He has access to a voice output device, but it's still difficult for Ronan to communicate what he wants or needs.  When Ronan is not successful in communicating his message with vocal or verbal cues, the behavior that accompanies those message are clear. 

Like when Ronan didn't want to get in the car one morning.  

Like when getting out of the bathtub turned into an emotional event.     

Like when an afternoon outing left us both in tears.  

Ronan's siblings pray for Ronan to have better communication.  Little Buddy prays that Ronan will understand what we say and be able to join in our conversations.  The Littlest Pickle wants Ronan to have "all kinds of words to say".  They are comforted when they pray.  I am, too.  I pray along side my kids always hopeful that Ronan will one day talk and that he'll be able to contribute silly stories around the table like his brother and sisters do each night during dinner. 

I love it when Ronan has the strength and desire to communicate with us.  I know that Ronan picks up on my emotions.  I'm sure he wasn't listening to Cheer Up, Charlie for his own benefit but for mine.   He used music to send me a message to me last week.  The message I heard was, "Cheer up, Mama.  Tough days are tough.  This I know.  But you can do this.  I know you can."  

You're right, Ronan.  And rest assured I will always do everything I can for you.  


 xo, Cat



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