Rise From the Ashes
By Cathy Jameson
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.
Wow! Big standing-O from the Bears for Ronan!
And another standing-O for Dad & Mom and the cubs for being his greatest fan club!
Posted by: MamaBear | February 08, 2012 at 04:45 PM
Thank you for sharing. I'm reminded of similar triumphs and how important it is to acknowledge those achievements. Way to go! I love that your whole family was there to hear him say ashes! Really a beautiful family. I'm also reminded to be patient in the frustration that our children experience and to just keep standing for the breakthroughs to happen. So thank you.
Posted by: MotherofPossibility | February 06, 2012 at 12:54 AM
Never stop trying. The Jamesons amaze me.
Posted by: just saying | February 05, 2012 at 11:59 PM
Cathy this is as much your victory as it is Ronan's. The progress he has made and the capabilities he is demonstrating are because you are his mother. Thank you for perserving for Ronan and exemplifying the potential for all children who are fighting towards recovery. I expect Ronan will one day say, "All that I am, or hope to be, I owe to my angel mother." - Abraham Lincoln.
Posted by: Sargent L. Goodchild, Jr | February 05, 2012 at 09:39 PM
Go Ronan!! We are all so proud of you and your amazing family!! You have warmed our hearts as we watch your progress and cheer you on from afar! Go, Ronan, go!! Well done!
Posted by: Lin | February 05, 2012 at 09:16 PM
Thank you all for sharing.....
Mommy to an eight year old non-verbal.
It gives me hope.
Posted by: StephM | February 05, 2012 at 06:20 PM
Cathy, your story brought tears of joy for you to my eyes. Thank you for sharing it!
Some of the latest techniques in repairing the speech center of a damaged brain involve music and singing.
9 years ago, a friend of mine suffered severe brain damage after a fall from a horse. Speech therapists taught her how to swallow again, and got her started with talking, with enormous difficulty. The therapists gave up as soon as she was somewhat understandable.
A friend of mine who is a voice teacher worked with her after that, and did some research. She found that often, people who cannot speak after brain damage can sing. This turned out to be true of my friend.
Recently, I've read that speech therapists have been using the same concepts in helping Gabrielle Giffords to relearn speech after her accident.
Is ANYONE doing this with autistic kids??? Hello--they have suffered BRAIN DAMAGE THAT AFFECTS THEIR SPEECH....
Posted by: Taximom | February 05, 2012 at 05:21 PM
Cathy, Thanks so much for sharing this step in Ronan's progress! I look forward to hearing more as he ascends further up those steps - for he will! Now 14 and a non-stop talker, my son regressed and did not speak for many years. I feel eternally grateful that he learned that skill back after being so damaged. Progress was slow, but so much can happen over the course of five to ten years. When he started talking again, it was in the strangest way. He spoke only in vowels at first, so tree, me, B,C,D,E,G,T, see, etc would all be EEEEEEE. Being his mother, I could sometimes understand him if there was some context. I'll never forget going into the preschool one day (he was 3), and hearing him identify shapes (IIIII for triangle, etc). I told the teachers what he was saying, and they stared at me as if to say "look at this poor, deluded mother."
It is obvious I don't need to tell you, but I'll encourage you by saying Never Give Up!!! When I think back to what our entire lives were like just six, seven years ago, it is amazing to see where we are now. At some point, we almost felt like a "normal" family again, capable of doing things that "normal" people do. I have full faith that you will get there, too, and I will be saying a special prayer for Ronan today.
P.S. I know we all try everything, and some things work for some and not others, but if you have not tried bethanechol (for anxiety) or LDN, and you're looking for something new to investigate, I highly recommend both. Little to no side effects and great effectiveness. All the best to you and your family!
Posted by: Allison | February 05, 2012 at 04:52 PM
My son is now 25 and did not talk, but now he does. He is no chatter box though, and you get short phrases out of him rather than a whole tale. Still it is nice and I feel lucky.
I asked him if he remembered not talking at all. He said he did. I asked him why and he said it took too much of an effort.
To much work both mentally and physcally he said.
I had never thought that talking takes energy, energy to move the air out of your lungs, energy to control the vocal chord, energy to operated the tongue, the muscles around the mouth ---- and of course energy to form the words in your brain to begin with.
Posted by: Benedetta | February 05, 2012 at 01:44 PM
Hi Cat,
Echoing what Kent just said and a big thank you for your dedication in keeping us all involved in Ronan's continuous and hopeful journey! Like a beacon of light cutting into the darkness .....
Posted by: Teresa Conrick | February 05, 2012 at 12:43 PM
Cathy:
Thanks for such a beautiful story. Those of us who are still fighting in the trenches on a daily basis for our kids need such wonderful stories.
All the best,
Kent Heckenlively
Posted by: Kent Heckenlively | February 05, 2012 at 12:17 PM
Cathy, thank you for this beautiful success story!
I know so many parents whose children don't talk or are severely limited verbally. I have to think back and ask myself if 20-25 years ago it was common for mothers to talk about their child having verbal skills, suddenly losing them and having to slowly and painstakingly try to regain them. Twenty-six years ago when I was pregnant with my first baby no doctor ever told me to watch out for regression. They talked about developmental milestones etc. but not about losing learned skills. Today, it's part of the standard well baby visit and doctors are now supposed to caution parents to be on the watch for it.
Stories of regression are really scary. You think you've brought a beautiful, healthy baby home from the hospital? You think that he or she will just continue to progress and get better and better? Don't bet on it. Your bubbly, smiling little darling may, no one knows why, suddenly become crippled with all kinds of health and developmental problems and it's guaranteed that your doctor won't have a clue why it's happening.
This is of course why mainstream medicine stories about autism carefully avoid mentioning regression. They're helpless to explain it and they know it.
Anne Dachel, Media
Posted by: Anne McElroy Dachel | February 05, 2012 at 11:30 AM
Yeah, Ronan!!! Thank you for sharing!
Posted by: Jeannette Bishop | February 05, 2012 at 11:21 AM