My Secret to Surving an Apraxia Diagnosis: A Parents Perspective

The month of May represents Apraxia Awareness month, it also coincides with the month my son was diagnosed 5 years ago. Some days that feels like a lifetime ago, some it feels like yesterday. I have always tried to be very honest about my struggles coping with my sons diagnosis’s and those that have since followed – dyspraxia, sensory processing disorder (SPD), dyslexia, dysgraphia, dyscalculia and ADHD. Even writing that overwhelms me, you’d think I would be better at absorbing all of it. I refer to Apraxia as my onion. We pull back the layers, they burn, it hurts, I cry but we keep going and peeling them away. Apraxia managed to do something that very few things have, that is paralyze me with fear and emotion. I will never forget my desperation and subsequent anxiety. Generally speaking, I am a “fixer” or an actions person but I couldn’t and still cannot fix this for my son. I can only provide him with the best team and support to help him and continue to encourage him each step of the way.
Laurame

The inability to “fix” it for him lead me down a path that I never could have imagined. I decided to become a walk coordinator for Apraxia Kids to raise awareness on a local level, I began writing about the heartache, warning signs, and the importance of “finding your people.” In hindsight I believe it has all been my way of coping, feeling as if I am helping those who feel like I did 5 years ago. You will hear fellow Apraxia Mom Laura of http://slpmommyofapraxia.com/ and I frequently discuss the importance of opening up, finding your people, and creating your community. Years ago when Laura and I were still in the beginning stages we met due to both being walk coordinators even though we live almost 2000 miles apart. We were both constantly on the “hunt” for answers, success stories, anything in all honesty that could provide hope. That desperation led her to call me one day and say – “I am going to show up at Ronda Rousey’s book signing and talk to her, I swear she has apraxia even if it wasn’t previously diagnosed.” To be clear, Laura is a highly trained SLP that’s more than qualified to have had such strong opinions. Around the same time I found a very old news story about actress Gage GoLightly and had been “tracking” her (stalking sounds harsh) on social media. We began talking, she and her Mom spoke to me about their journey. Those two encounters and  stories of struggle and success that Ronda shared  http://slpmommyofapraxia.com/2015/06/01/1293/ and that Gage shared https://apraxiamommabear.com/blog/item/7-raising-a-chocolate-chip-cookie-in-a-sugar-cookie-world-from-nonverbal-child-to-accomplished-actres allowed us feel it could and would all be okay. It made our Apraxia world not feel quite so small anymore. Both Ronda & Gage have extremely dedicated families that risked a tremendous amount to get the best help they could.

. When I spoke to Gage’s Mom (Michele) she told me I was the first Apraxia parent she has ever spoken to!! She expressed how much it would have helped her to have that community and people that actually understood. It would be shortsighted of me to not mention that (CASANA) now, Apraxia Kids started from a couple of moms in a speech therapy office. One of those moms, Sharon Gretz determination to help her son and every other child with apraxia led to an organization being born. I wanted to share these stories with you to remind you, you are stronger than you think. The moms that are part of my Apraxia lifeline had their entire lives flipped upside down and came out swinging (no pun intended Ronda) They, we also struggled and sometimes still do and you know what, that’s okay. We may not have all of the answers for each other but as we peel apart that onion we support each other every step of the way. We have become stronger together and that’s why we always say, “find your people.” I have been fortunate, my moms are powerhouses we stand together for insurance policy changes, inclusion, early intervention, research, and sometimes a really good cry.

In a few short weeks I will have the privilege of sharing the stage with a few of these fabulous women. This year the Apraxia Kids conference is offering a unique session in a Q & A style that will allow the audience the opportunity to ask us about our journeys. Attending this event will hopefully save you a few hundred hours of Googling, showing up at book signings, and “tracking” down people on social media in a n attempt to find others that “get it.”

We are Pre Conference 100 and ready for anything. Bring your tears, smiles, fears, hugs and all of your questions. We truly are stronger together – join us.

Pre Conference Registration

 

Ryder Gage 3Ashlynn