Monday, October 20, 2014

The Means to Communicate

Ronan had language but lost his speech around the age of 2.  Since then, we’ve been praying that Ronan could regain his words.  Last week I was bemoaning the fact that Ronan only had 7 functional words.  He uses only five of them and only when he wants to.  His receptive language skills are through the roof.  His expressive?  Not so much.  For all intents and purposes, Ronan is non-verbal.  Out of all of the many challenges Ronan faces, not being able to speak is the one I worry about the most.   

For years, I prayed to God asking that Ronan get better.  Once, when my Mom came to visit us, I confided in her telling her how completely frustrated I was.  “Mom, other kids lose their speech, but with intense intervention, some of them are slowly gaining it back.  I’m praying about it, and I’m doing everything for Ronan like other moms have done.  But no matter what I try, Ronan does not talk.  I’m getting really frustrated.”  Mom encouraged me to continue to pray, and to be specific in my request for Ronan. 

I prayed, “Please, God, please give Ronan the means to communicate.”

Ronan would try so hard to talk.  But nothing intelligible would ever come out.  If Ronan needed something he would look at us, think he was saying something we could understand but would babble incoherently.  I would try so hard to decipher what he was saying, but more often than not, I was totally baffled.  He’d wait for me to respond, and when I didn’t know how to, he’d throw a tantrum. 
Because Ronan couldn’t verbally tell me what he wanted, he’d use his behavior to communicate.  Sometimes that behavior was negative and would include tantrums, aggression and tears.  That was understandable.  But was not an effective means to communicate. 

I wanted to give Ronan the means to communicate appropriately.  I wanted to reduce his frustration.  I wanted to help him gain expressive language skills that would hopefully lead to some independence.  His therapists and teachers and I tried everything—picture exchange card system (PECS), alphabet boards, flash cards and sign language.  Ronan finally responded to sign language.   

Responding to sign language opened a huge door for Ronan.  He’d already been exposed to it for quite some time as I used sign with his big sister, but early on, Ronan wasn’t interested in it.  Around the age of 5 though, not only was he interested in it, but he was hooked on it.  Boy, oh boy, was he hooked! 

Ronan quickly realized that when he signed, he got.  Like when he signed cookie to me for the first time, you better believe he got as many cookies as he wanted each time he signed cookie!

When Ronan realized he could ask for things and be given them (like a cookie, his ball, a favorite movie or a cherished book), things got a little bit easier, not just for him, but for me too.  It became less of a guessing game to figure out which snack Ronan preferred.  It became clearer for him that words = things.  Things = happy Ronan.  Happy Ronan = hopeful Mommy. 

We immersed Ronan in sign language at home.  For a stretch of time, Ronan averaged learning and using 7-10 new signs a week.  I labeled the house with flash cards with sign language signs and made sure to have the word or phrase also written on the cards.  Determined, his sign language vocabulary grew to over 100 signs within a few months.  While his sign language skills grew, so did Ronan’s reading skills.  I didn’t know that Ronan could read until he signed a word that was on a flash card.  This particular flash card had no picture, just a word.  Ronan had seen the word on a picture flash card elsewhere, remembered that printed word, and signed the word to us.  I was blown away.

For a stretch, we were on a good roll with Ronan’s communication.  But like with everything else I’d introduced, it felt like Ronan was about to plateau. 

I confided in my Mom again.  “Mom, Ronan’s language—it was going so well, SO well.  He’s signing.  He’s his words.  But sometimes he tries to talk and nothing comes out.  Or he says something, but it’s all garbled.  It makes no sense.  He gets so frustrated.  Me too.  What should I do?”  My Mom reminded me how excited and hopeful I was when Ronan began to sign.  She reminded me of the prayer I'd been saying too.  She also pointed out, “Cat, don't lose hope.  You prayed for Ronan to communicate.  Look at him.  He IS communicating…through sign.  If you want him to talk, then change your prayer.  Be specific in what you ask.” 

Duh.

So, I changed my prayer intention.

“God, please give Ronan his words back.” 

I’ve been saying that prayer for years.  And for years I’ve been watching Ronan use one word after another, even ones I never knew that he knew.  But he’s not using those words verbally.  Sure, he’s writing them, typing them and signing them, which makes me very thankful.  It’s just that, we all hoped that he’d be able to talk again.  We’ve heard his voice before.  And we miss it. 

After some thought, and some prayer, I consulted with Ronan’s siblings.  They are Ronan’s biggest cheerleaders and want to see their brother soar.  They also pray that Ronan can use his words again because they see how excited Ronan gets when he can successfully communicate with them.  
One night before prayer time, we thought and thought and thought about all the things that Ronan has overcome over the years.  It was so nice to hear the siblings recognize how hard their brother works to make each and every gain. 

Next, we thought about what it is we hope and pray that Ronan can do.  I asked the kids if we might change the prayer we have said for Ronan so that it can be even more specific than the other ones we’ve said in the past.  The response was a resounding yes.

That night, we started to say this prayer:

“Dear God, please help Ronan to speak, to talk and to have conversations with us.”  Ronan’s younger brother added, “And please help Ronan to play LEGOs with me.”  Little Buddy longs for his big brother to play with him. 

It’s been a few weeks since we started saying that new prayer, and I’m excited to share that Ronan said three new words today.  I got a message from his teacher that at school, Ronan replied, “I don’t know,” to a question he was asked.  Like at home, when we get to hear Ronan’s voice, it wasn’t the clearest of speech, but it was audible and it was an appropriate response. 

Three new words.

No, a full sentence! 

Wahoo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I told my Mom right after I got the news.  Her response was, "Glory be to God!!!"  

Yes, glory be to God.  

We’ll be continuing to pray for Ronan as we do every day, but tonight, as we say our nightly prayers, we’ll be adding something else. 

Dear God, Thank you.  Thank you so, so much. 

xo, Cat



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