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Ma: One Syllable, Two Letters, A Thousand Grateful Tears

Mother-beautiful-word-lips-mankind-quote-on-storemypic-993dbBy Cathy Jameson

Ronan said my name the other day.  He was trying to get my attention, and boy, did he ever!  He wanted his iPad while we were in the car, but it needed to be charged.  As I sat at a red light, I saw Ronan in the rearview mirror signing for his iPad.  “iPad, iPad, IPAD!”  He really wanted it.  His facial expression and rapid signing let me know that.  Even though he was communicating his request well, I told him he couldn’t have it yet.  I reminded him that the iPad was charging and that he’d get it soon.  Further down the road when we stopped again, he took his attempt to the next level.  That’s when I heard Ronan.  Then I heard him again as he said, “Ma…”  I whipped my head around so fast and stared at my non-verbal 15-year old in the backseat. 

“Ronan!  Did you just say….mom?!” 

Looking me straight in the eye, Ronan stared at me and then muttered loudly, “Ma…,” and smiled back at me.  I never knew how beautiful a two-letter word could sound.   

Ronan doesn’t talk.  He lost his speech post-vaccination over a decade ago.  We get many vocalizations, but clear words are few and far between.  But one day last week, he spoke with purpose, with inflection, and with a smile.  He’s said ma (and mum-mum) before, but it’s been a very long time since I heard his sweet, and now deeper, voice asking specifically for me. 

When he does attempt to speak, we can hear vowels.  We can hear consonants.  We can hear inflection and emotions.  He’s in there.  We believe his voice is somewhere in there, too.  In all honesty though, whatever does come out of his mouth usually sounds like muttered jibberish.  That’s frustrating for us and very frustrating for him as well. 

Ronan never stops trying though.  Either with sign language or by typing his requests, Ronan tells us exactly what he wants.  Every now and then, like last week, we’ve been blessed to hear his voice.  Only one or two words at a time, we love to hear him speak. 

One time, Ronan was d-o-n-e with me and belted out, “ahhh duh-n” with an accompanying look that look spoke volumes.  He was about to reach his limit and told me right away that he was all done listening to his Therapeutic Listening CD.  Another time, he was all done wearing his shoes and told me by saying, “ahhh duh-n” and by signing the ‘all finished’ sign.  When he was more than all done with a boring movie I chose for him because he couldn’t find his favorite DVD, he signed ‘no’ and typed out f-i-n-i-s-h-e-d.  I didn’t believe Ronan and asked if he could watch it for a bit longer.  Oh, the look he gave me!  He went to his voice output device and typed 10  9  8  7  6  5  4  3  2  1  0.  Then he typed f-i-n-i-s-h-e-d one more time. 

I taught Ronan to use a countdown strategy years ago.  It’s come in handy at doctor’s offices when Ronan’s been asked to do RDJrinvasive-to-him procedures like putting on and keeping on a tight blood pressure cuff.  I don’t let him see it, but I can’t help but smile when he uses that countdown strategy on me.  He becomes so typical like my other children get when they don’t want to do what I’ve asked them.  Like the siblings must, I make sure Ronan follows through with whatever I’ve asked him to do.  He usually does, but I love to imagine that he’s rolling his eyes, sighing heavily while thinking, “M-O-M!  You’re so mean!” as he completes whatever it is that I’ve asked him to complete.

All done.  Finished.  The countdown.  Be it typed, signed or vocalized, it’s meaningful.  It’s 100% communication.  It’s effective, too.  For so long, though, we’ve been used to short, cryptic messages.  We’ve been used to catering to Ronan’s every need without the luxury of clear communication.  Without being able to decipher what he’s uttering, we’ve tried to stay one step ahead of Ronan making sure his path is clear, his needs are met, and his wants are satisfied.  Without being asked, all of that has happened.  Now that Ronan’s been able to get my attention with his voice once, twice, and three times in a row, you better believe we’ll up stakes and hope to hear him contribute more verbalization. 

Even though he’d already gotten my attention, even though he’d made his thoughts perfectly clear, even though he’d waited long enough, Ronan was agreeable while I had my camera out to speak one more time.  I thank the Lord I had means to video tape that rare moment.  I’m even more thankful that Ronan’s siblings were over the moon excited to hear that awesome brother of theirs tell their mama that he needed something.  They replayed the short clip several times this past week.  I’ve played at least a dozen times myself.  Here it is for you to enjoy as well.   

https://youtu.be/fjmAQ9MOLgo

I’m so glad that I was able to get Ronan to share his simple but profound request one more time. 

Ma.  Hey, you! 

Ma.  Yeah, you! 

Ma.  I need you. 

One single word, one hopeful moment caught on tape, it was enough to fill our hearts with joy.  We’ll hope for more joyful moments.  We always will because we never want to stop believing in Ronan.

Cathy Jameson is a Contributing Editor for Age of Autism. 

Comments

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Kim

Congratulations! It goes straight to your heart to hear your son call you mom. I’m so glad you two were able to experience it together!!!!

Aimee Doyle

Wonderful, Cathy. Keep the hope alive for Ronan's speech to improve. Maybe at some point his brain will heal enough that he can make more progress. Until then, he is so lucky to have a loving family.

Makes me wonder about a couple of things:

1) I've always believed in the power of the body and brain and nervous system to heal, and I'm learning more about the concept of neuroplasticity. So it seems that healing should happen with time and support, but I've seen with my own son and others, that healing seems to level off. What is it that keeps the brains of our children (and disabled young adults) constantly inflamed?

2) From what I've read, a certain number of children and adults who are non-verbal or semi-verbal can learn to effectively use augmented communication systems - sometimes at a very sophisticated level. Once they learn to type, they can use the computer to communicate with the world. I wonder how many non-verbal children can learn to communicate this way, and what it is about those children's brains that make it possible, while others are more limited, say to a PECS type system.

Thoughts anyone?

Grace Green

Last week I heard an item on a BBC radio science programme, about a man who had had two strokes, a couple of years apart. After the first he GRADUALLY (sound familiar?) lost his speech, until he was only able to communicate with his wife by writing notes, (which he was still able to do). After the second stroke, his ability to speak suddenly returned, much to his own surprise. This meant that he was able to be interviewed about WHY he couldn't speak after the first stroke. He found it quite difficult to explain, but the root of it seemed to be that he just couldn't find the words. With cases like this one, it seems to me that it should become possible for therapists to understand what is going on, and help the sufferer to learn to speak. Of course, I think it must be easier for someone who could speak before, than a young child who is just beginning to learn. Good luck, Ronan and family, for further progress.

Gayle

How wonderful to hear Ronan say MOM! As time goes by hopefully you will hear more words coming from your son and trust me that you will. In small baby steps he will begin to say more and more and before you know it he will be speaking his thoughts to you. KEEP HOPE ALIVE always and never give up! Bless you and Ronan.

Marie Simonton

Mom is one of only three things my son can say. I sometimes daydream about having a conversation with him, imagining what his voice would sound like. I think I've lost hope that it'll happen in this lifetime. Now I'm counting on heaven. Keeping hope alive is the most important part of this journey.

ChrissyD

beautiful!

Jeannette Bishop

The bright, beautiful, sunny morning we're having out our way just got unexpectedly brighter!!! So wonderful, Ronan!

bob moffit

Cathy … you .. and .. Ronan .. have made my day by sharing your wonderful experience with us. As Jesse Jackson has famously said .. KEEP HOPE ALIVE .. and that is exactly what our family intends to do .. KEEP HOPE ALIVE that we live to see the day when our 19 year old says Mom or Dad.

Benedetta

"Hugs"

Tara McMillan

Yay!!!!! WHat a wonderful thing to hear!!!

Susan Welch

Just beautiful, Cathy.

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