I wonder what Ronan’s voice would sound like if he could talk.
Ronan’s youngest sister randomly uttered that out of the blue last week. Hearing that said out loud stopped me in my tracks. It’s something that I think about regularly. The difference between her saying it and my thinking it is that I know what Ronan’s voice sounds like. Having only known Ronan to be non-verbal, my 7-year old doesn’t remember the husky voice, or the twinkle in Ronan’s eyes, or the way he’d light up a room when he entered it. She only knows Ronan to be mostly quiet, somewhat detached, and that he prefers to be off on his own.
It is very, very rare that we hear any words from Ronan these days, including hearing the words he could say years ago. Spoken words are nonexistent. Ronan can vocalize and does so frequently, so we encourage Ronan to continue to vocalize those sounds. We do that always hoping that they will turn to verbalizations. But he can’t talk like his siblings do. He can’t verbalize the thoughts, opinions, fears, and feelings he has. He can’t speak up for himself like other kids can. Ronan can communicate with a speech output device, but that device, as high tech as it is, is not Ronan’s true voice; it’s a computer generated string of prompted words that lack affect and emotion.
That husky voice, the twinkle in his eyes, that way he could captivate an audience with just his presence. I miss it, and my youngest daughter yearns to experience it. We pray that one day speech will return not just for her benefit, but for Ronan’s. Ronan tries hard to communicate the words he knows when he signs, when he types, and when he uses that voice output device. Those attempts sometimes lead to success, but they can also result in dismal failure.
The struggles that every yesterday brought are hard to move past, but we do try to do that. We try to understand why. We try to find the hopeful. We try to see the positive. And so that we do not dwell on what doesn’t make sense, or on what cannot be answered, we turn our efforts into hoping and dreaming and praying for progress, for reached milestones, and for miracles instead.
We’d love to hear Ronan talk again. We’d love to hear him speak up. We’d love to see him interact socially with others also. If he doesn’t do any of that, or if he simply can’t, we’ll continue to encourage Ronan do what he can and to do it at his pace. We have learned so much by following his lead. He has always been the focus. He will remain our focus so as long as he needs us to. We walk this path with Ronan and for Ronan because he is the reason we are on this journey. I never want to lose sight of that.
Cathy Jameson is a Contributing Editor for Age of Autism.
I am sorry Cathy; I have been accused of putting words in my young man's mouth. When I want to know how something goes - like he is thinking about going back to college and he is trying to get a grant -- and he won't give good details -- I make stuff up and run it past him.
Can you believe that ?
I came from a long line of very good story tellers --
My daughter told me the other day to just stop it -- -- well good maybe she has the energy to drag ggg-gggg it out of him. See how long it will be before she starts making things up tooooo -- she also is a good story teller.
Posted by: Benedetta | August 24, 2015 at 08:41 PM
Cathy, I hope that someday soon Ronan's voice will ring out in health and happiness. Is that too much to ask ? Do other people not affected by vaccine injury even comprehend what our children and their families have lost ? Their voice, health, future, sometimes their very lives. I think we need a national protest day.
Posted by: Theresa 66 | August 24, 2015 at 04:03 PM
Dear Cathy, Have you read Ido in Autismland? It's about your subject matter here -- communication. Ido has his own website; he is 19 now. http://idoinautismland.com
Posted by: mary w maxwell | August 23, 2015 at 08:44 PM