Apraxia National Conference: A candle in the window
It’s been three years since I last attended the national conference on apraxia. At that time, my daughter had been diagnosed with apraxia for just under a year, and I was still scared and sad about what the future held for my sweet Ashlynn.
I re-read my blog post I wrote after that conference, and it didn’t begin to capture all the emotions I had at that time, or what those three days actually meant to me.
It might have been because I was in the thick of it then, scared and sad on the inside, but all game face on the outside just trying to learn as much as I could to help Ashlynn.
I mentioned meeting Sharon Gretz, the founder of CASANA, and said merely that I felt an immediate kinship with her and we swapped stories. That is all true I suppose, but that meeting was soooo much more.
I remember she told people in the fb group to come and introduce yourselves if you were attending the conference. My husband went with me, and I remember telling him I felt like I was about to meet Julia Roberts. I was nervous, anxious, and sweating profusely. When I walked up to her and introduced myself, she was immediately kind and greeted me with a sincere smile. I wanted to act smart and professional, but as I started talking about Ashlynn I choked up and had tears in my eyes. Embarrassed I looked down and finished my story, and as I slowly looked back up, I saw she had tears in her eyes as well. For once in those lonely 9 months where I felt like the shittiest SLP on the planet for having a kid I couldn’t help talk, I felt I had met someone who understood and who was going to help me. Sharon’s not an SLP, but she had completed all the coursework to be one minus the clinicals, and she was the closest person I had to understanding how I felt and how to help without judgement.
That’s the real story. Maya Angelou said people will forget what you said, but they will never forget how you made them feel, and that’s true. I felt heard, I felt understood, and I felt hopeful.
I also mentioned learning about a bootcamp, and I non-chalantly talk about how I will apply.
Hahahaha
I’m laughing because the process of getting to bootcamp was anything but non-chalant and easy. It was like applying and trying to get into graduate school all over again!! Oh how naive I was!!
In a short three years since that conference, my life completely changed. I’m trying to find a word that fully describes it. Metamorphosis? Maybe that’s it. At that time I was a caterpillar inside my crysillus who couldn’t even imagine the new world I would see and the new possibilities that would be available once I had my wings.
CASANA gave me my wings. Is it no wonder then why I volunteer my time as a walk coordinator, try to spread awareness, and mention them wherever I go? How can you ever repay someone who literally pulled you out of a dark place, gave you hope, and changed your life and more importantly your CHILD’s life for the better?
I really and truly don’t know where Ashlynn would be right now without the knowledge I gained from CASANA. I know for sure she wouldn’t be talking as intelligibly as she is. No way. She’s severely impacted and without proper treatment, kids with apraxia do NOT just get better on their own.
She’s mostly resolved of her apraxia at this point, so now conference is about learning how to help her with all the residual problems, like reading, writing, and word finding just to name a few.
It’s also about learning new things and gaining new ideas to help my current clients.
It’s about going back and shaking the hand and hugging the people who made all of this possible and saying thank you for being my candle in a window on a cold, dark winter’s night (Thank you REO Speedwagon for those lyrics).
It’s about going from the only SLP on the planet who had a kid with this rare speech disorder to meeting in person all the others I have found just like me through social media.
Its about seeing all the other SLP’s nationwide who have decided to commit themselves to helping kids with CAS and being in awe and humbled by their commitment and love for our kids.
Most importantly though it’s about this girl right here. 
She was sad to see me go, and for the first time in her almost seven years, she told me,
“I will miss ya mommy.”
She also asked me if one day she can go with me to the conference. I smiled and told her yes, because I can’t think of anyone who deserves to go to the conference more than her. I hugged her and told her,
“One day baby. One day, and you’ll be the star of the show.”