A rush of excitement filled my house this week. Ronan found a word! I should restate that. He retrieved a word he’d said many, many moons ago. Gathered around his room one night after being tucked in, Ronan’s siblings and I waited to hear him. After several attempts with great encouragement from Daddy, we cheered in disbelief and then in ecstatic joy when our own ears were graced with this major accomplishment.
The excitement started earlier in the evening when Ronan first spoke. My husband knew it was more than just a vocal attempt like we sometimes hear. When Ronan spoke again my husband quickly called me over to please come have a listen myself! I sat on the edge of Ronan’s bed with my typical children standing close by because they too were filled with excitement. Ronan had only moments earlier uttered this word for Daddy, so we were all anxiously hoping and waiting to see if he could say it again. While Ronan lay all snug under the blankies my husband began the simple nursery rhyme slowly with a twinkle in his eye, “Ring….around….the Rosie. Pocket…full of…posies…..” Wait for it. Wait for it. “….Ahhhhd-chgees….ahhhhhd-shezzz…,” Ronan sputtered while Daddy continued amidst the squeals from the rest of us, “WE ALL FALL DOWNNNNNN!” With rounds of belly laughs, lots of smiles and some fist pumps in the air, that moment was a perfect way to end another one of our very long days.
Years ago we used to sing Ring Around the Rosie to Ronan because we knew he could say “ashes.” He always said it when he was little. Ronan would wait excitedly for his cue to fill in that part of the song. He could say it so many times back then. Over the years we’ve tried to get him to say “ashes” again, but he never did. This week something magical happened. We heard his voice again. Very, very infrequently Ronan makes sounds that could be words. It takes great concentration and effort which can quickly turn into frustration followed by silence. When some sounds turn into real live words you’d have thought Ronan just gave a Valedictory speech. How we cheer for him! The entire family jumps up in the hopes of hearing Ronan speak one more time because his speech is one of the missing pieces we all so diligently work to find.
What a feeling it is to hear Ronan talk. He had two more verbal attempts and successes in the last few days with this one needing to be noted as well. This week I didn’t doubt his ability to talk like I sometimes do. I didn’t have to question myself, Could what I just heard really be language? Sometimes it is a fluke and I think, Oh! Was that…? Did I hear him say something? Nah, it was just noises, not even babbling. No return of words yet. This time though, he didn’t just sort of make out a word I was hoping he’d say. He did say some words.
Ronan’s verbal attempt turned me into a bubbly mess as I squealed, “HOLY COW! He just said bye-bye!” While getting into the car at the end of the day his teacher said, “Bye, Ronan. See you tomorrow.” As she waved, Ronan waved too. Then he blew her a kiss and told her bye-bye. It just spilled so beautifully out of Ronan’s mouth. He didn’t jump up and down like I wanted to. He didn’t scream at the top of his lungs shouting for joy at this amazing act. His heart probably didn’t feel like mine, like it was going to explode into millions of tiny little hearts dancing along the sidewalk. Nope, Ronan just said what he had to say as if he said “bye-bye” every single day. Immediately after, Ronan sat down and waited for us to drive off. He made his daily signed request to watch a movie for the ride home. I sat in the driver’s seat ready to take him to the moon if he wanted that. I was in awe, in love and again in hope. I was also impressed at how calm Ronan was because speech seemed so natural for him at that moment. Ah, to be calm. To one day experience that feeling more often. I need that.
Just one day before the successful bye-bye Ronan and I fell flat on our faces together. I was trying to get Ronan in the entrance of a doctor’s office. He was having none of it. Redirecting wasn’t working and none of his typical reinforcers were either. I literally fell into a heap onto Ronan as I tried to walk us into the waiting room. Ronan was done being there even though we’d only arrived a few seconds earlier. When I fell I made sure not to fall directly on Ronan, but I’m not positive that I maintained an ounce of grace in that attempt. Having to redirect Ronan to understand that sometimes he has to stick with the routine I have had to create for him can easily become a struggle. He goes from calm to annoyed as I go from hopeful to ‘Oh, no. Not again’ wondering why does this have to be so hard?
After lifting myself up and getting Ronan back on his feet, we did what we had to do and then exited as quickly as we could. It wasn’t a completely smooth transition which reminded me that Ronan’s frustrations and how I manage them needs loads of work. To make everyday moments possible, bearable and livable, and then to accept whatever it takes to make them happen, will hopefully bring back some of that calm I know exists. Ronan and I live in constant teachable moments, so I have faith that we’ll continue to try, try again. Some of our moments have been complete failures while others were perfect stepping stones to something bigger and better. As we continue, my dream is to give my child as much of the world as he can handle and to get him closer to a sense of independence. In that search I’m consistently trying to manage whatever the world throws Ronan’s way. Every moment, even the rotten cry-myself-to-sleep ones have the potential to be turned around into successful lifelong skills. Thankfully we are having more jump-for-joy and can-you-believe-it?! types of occurrences lately. They make all the difference in the world.
Every day I hope that Ronan is a little bit farther ahead than the day before. It’s true that since he was affected so long ago I’ve gotten used to some of his disabilities. It’s when he shows a regular, typical kid ability that can lead him closer to survival in the outside world that my dream for Ronan grows stronger. He has to one day be able to live more than just the life we live in our house. Some days, and some of his disabilities can feel like a sentence: he’s locked into skills he’s trying to break free of. But, every sentence has an ending. That desire to get Ronan ready for real life out there keeps me hoping, dreaming and always believing. If I can aim toward improved skills and someday possibilities I see a brighter future ahead. I know it’s going to take continued commitment and lots more energy than I physical have. We may fall down in our tracks as we run into some potential gains that later turn into impossible-to-maintain skills. We’ll fall down proverbially and maybe even literally, but I will always pray that I have the strength to pick Ronan and myself both up every single time that happens.
It’s best to have failure happen early in life. It wakes up the Phoenix bird in you so you rise from the ashes. –Anne Baxter
Cathy Jameson is a Contributing Editor for Age of Autism.