Apraxia is for the BEST?
The 2016 National Conference on Childhood Apraxia of Speech has come to an end. As I sit in the plane, I look at the burnt orange, red, and brown sunset setting over wispy clouds and the windy city. Since I live in Denver, we are flying west, and it feels like we are literally flying into the setting sunset sky.
I get to reflect on my time here in Chicago, and honestly, the first and foremost emotion that I feel is gratitude. It is almost unbelievable to think that just a few three years ago, this conference came to Denver and though it seems like a long time ago, if I close my eyes, I can still remember the emotional whirlwind that was that time.
I was honored to give a talk with a fellow SLP, Alyssa, who specializes in Apraxia of Speech out in Las Vegas. It was Alyssa who had initially pitched the idea to me, and speaking with her felt as natural as breathing the air. We seemed to find a perfect rhythm despite living miles away and not seeing each other in person in the last two years.
Alyssa is inspiring to me, because I guess as a mom and SLP, I feel like my passion for kids with CAS is expected and natural. I do after-all, have a personal buy in. However, Alyssa’s passion comes strictly from knowing, finding, and heeding her calling. Treating kids with apraxia is truly what she was meant to do and I believe that is conveyed in her words, her actions, and her energy!
When we started our talk, Alyssa polled the audience to see how many people were parents. The Apraxia conference is unique in that is a place for BOTH professionals and parents to come and learn about CAS. Our audience was comprised of mostly parents, as we expected; but what caught me by surprise was the amount of many first time parents.
As they raised their hands, I was transported back in time. I remember being a first time parent attending the conference. I was anxious and overwhelmed, hoping I would learn things to help my daughter. This year though, I was the speaker, and I was looking out onto the sea of parents, and as I scanned their faces, I was emotional remembering my very self sitting in their seats. Alyssa said it best when she quoted a professor who was speaking at her daughter’s college orientation:
“You will succeed because you are HERE.”
All of these parents had shown their sacrifice and their commitment merely by coming to this conference, and she was absolutely right. I remember Sharon Gretz telling me once when I was lamenting over all of my daughter’s negative prognostic indicators, “Laura, never underestimate the influence of one kick-ass family.”
Oh, and that leads me to Sharon. As I said in my previous post, I did exactly what I set out to do, and hugged her and thanked her for everything she has done not only for me and Ashlynn, but to now the clients I have that benefit from CASANA. Ever humble, she blows me off, but I do hope on the days she is receiving criticism or feels low, she remembers all those she helped. This year as I shared my story of how Sharon helped me with many participants, I was surprised (not really) to hear how all these other people had also found hope because of CASANA and because of Sharon. People literally tearing up describing how Sharon had so graciously taken her time to listen to them and help them as well when they needed it the most. People who now were willing to volunteer everything they could to give back because of one person’s act of kindness.
Me with Sharon Gretz and another SLP apraxia mommy Nicole
This conference truly is unique. There are world renowned apraxia experts just as gracious, patient, and willing to speak to parents and give them free advice just as Sharon is, and I can’t help but to believe that is fostered from the top. If you are part of CASANA, you want to be as of much help to others not because you are expected to, but because you genuinely want to. In my case, I want to pay it forward. I can never repay Sharon, but I can help others and give them what she gave to me, or at least I hope I can.
International Apraxia Expert David Hammer walking toward the stage. At the conference, he is as accessible to talk to as any attendee.
This year, three years later, it’s hard to believe what a different place I am in. I wasn’t even anxious to give my talk. I was excited, because I finally felt I could give back, and that is a great feeling after feeling like all I was doing was taking from CASANA. That doesn’t mean the pain I felt during those years ever truly goes away. Much like Sharon when she teared up hearing my story, those emotions will forever be tattoed onto my soul. I showed a video of Ashlynn after she was first dx. Smiling, happy, and engaging, her speech was so poor but her energy was the same as it is today. I teared up watching it despite being well past those times, partly from remembering my sadness, and partly out of pride. I suspect now from observing Sharon and Kathy, another CASANA staff member with now grown kids who had apraxia, that pain will never be forgotten. I find peace in it now though.
Three years ago I knew not one other SLP mommy of Apraxia, and this year I have a picture with seven others. Ghandi said to be the change you want to see in the world. I put it out there, and it came back! I needed to meet others like me, and boy did I find them! Talking to them is like talking to an old friend. No background is required, they all just understand and “get” me.
SLP Apraxia Moms all in one place!
I was able to meet fellow walk coordinators and past bootcamp graduates. Sometimes, I would be sitting alone and hear a neighboring conversation. I would smile as people would relay their “it’s a small world” conversations and muse at coincidences. I would turn away and smile, wondering how people honestly believe in coincidences, because as you know, I believe a coincidence is nothing short of God telling you this is where you were meant to be.
Apraxia mom, Apraxia Advocate, and Apraxia Walk Coordinator Michelle who I have become friends with. I have a feeling Michelle is going to be part of a HUGE apraxia awareness movement this year.
Perhaps the icing on the cake for me, was sitting in the main ballroom during the closing ceremony. Ronda Rousey’s mom, AnnaMaria De Mars made a video specifically for this crowd and for this conference. It happened simply because I emailed and asked. You could have heard a pin drop while she was talking. People gasped when Sharon announced they had a video from her to us, they laughed when she told jokes, and they nodded as she talked.
In that moment, my apraxia mom friend leaned over and said, “you done good.” I smiled, because I finally feel as though I have paid it forward. After years of just taking because I was so desperate to help my daughter, I hope I have made a dent in helping others the way I feel I was helped.
Ms. Shelley Kelley, my kindred apraxia soul sister. No words required.
The closing speaker, Jennifer Keefe, who has a child with apraxia Danny Keefe who has been featured on numerous national news outlets said it best when she said,
“There is more good than there is bad in this world,” and Ronda’s mom in that video told us to think that “Maybe, it’s for the best.”
The theme this year of the conference was “Standing Strong, Facing Challenges.” It’s fitting because, without our trials and tribulations, we may never be as motivated to succeed and we may never be as motivated to defeat the odds, just like Ronda did, just like Jennifer Keefe’s son did, and just like Ashlynn will.