During her CASANA Bootcamp experience, our Founder Brooke Rea met fellow SLP Laura Smith, otherwise known as SLP Mommy of Apraxia. Laura is a champion advocate for all things CAS and her daughter Ashlynn, and we wanted to share some of her story with you as a unique Parent Perspective. If you want to know more about Laura or her journey with CAS, please check out her blog and/or Facebook page (links in the bio below).
Your journey with CAS started uniquely given your profession. Could you tell us a little about it?
When my almost three year old daughter was diagnosed with Childhood Apraxia of Speech, the guilt and worry hit me square in the face. I like to imagine many parents felt like me, and in fact, I do know many who felt this way, but I still had added guilt. That guilt was that I was also a practicing pediatric SLP. Let me let you in on a little secret. Childhood Apraxia of Speech is barely touched on in graduate school. It is grouped in with motor speech disorders, which is a broad array of disorders mostly concentrated in the adult population.
I worked with my daughter for an ENTIRE year and never realized I was dealing with CAS. The minute the evaluating SLP said it, I remember instantly knowing it was true. I cried tears not only for the diagnosis and for my daughter, but tears of guilt that her own mother, an SLP, missed it.
The grief and guilt were overwhelming, and when emotions overwhelm me, I throw myself into work. I set a goal to become an expert in CAS, though I didn’t know how I would do this. I started my blog slpmommyofapraxia.com as a way to reach out to other parents and maybe meet another SLP who also had a child with it. I made the fortunate decision of attending a CASANA conference and the rest is history. It was life changing and I can never thank CASANA enough. I had found my people. Knowledgeable people. Generous people. Passionate people committed to helping parents and children affected by CAS. I now split my time between the public school and in a private practice I started where I specialize in Childhood Apraxia of Speech.
You’ve had some fairly public moments of advocacy for CAS. Could you talk about those for our readers who maybe aren’t familiar with them, and share any tips you’d pass along to others for advocating on behalf of their child?
Well, my public advocacy moments are really a mix of luck, serendipity, and my firm belief that a coincidence is never a coincidence; but rather God (or the Universe or whatever you believe) trying to tell you something. The most famous incident came from an article and subsequent encounter I had with a famous MMA fighter named Ronda Rousey. The story ended up going viral and the ripple effect has been enormous. You can read about it here. Her Fight, Our Fight: The day we met Ronda Rousey
I have also intentionally sought out guest blogs from various outlets like the ASHA blog and The Mighty, which all help to spread awareness as well. If I have any tips, it’s believe in what you have to say, and then put yourself out there. As a parent, you are probably one of the best people to write about CAS because your passion for your child will come through. If you set a goal of advocacy and then listen to coincidences, I guarantee, opportunity will follow. I hear it time and time again from fellow moms, just like you, just like me; they find these serendipitous opportunities because they set a goal and then pursue it.
While you’re still knee-deep in your journey, could you share what drives you to keep going for Ashlynn and CAS when you’re exhausted?
Oh my gosh this question sounds complicated, but it can be summed up in one picture:
Her face. Her being. Her essence. Ashlynn from day one has always had a quiet but determined tenacity, an understated strength, and a resiliency by which I am always astounded. She never gives up. She always faces each morning with a smile, and if SHE can be all this, if SHE can do all this, and SHE’S the one fighting apraxia, then what is my excuse? No excuses. If I even start to feel sad, or hopeless, or worried….. I see her face and I remember I have no excuse. I keep fighting. I keep advocating.
Also, I intentionally seek out stories, like that of Ronda Rousey, and re-read them periodically to remind myself this fight can be won. The most recent story to come out comes from a fellow “global” apraxia mom Michelle Leigh, who upon discovering actress Gage GoLightly had global apraxia, set out on a mission to meet her and learn her story. She too had no idea how she would do it, but it was her mission and she eventually succeeded. You can read about that success story here: Raising a chocolate chip cookie in a sugar cookie world. These stories keep me going and I literally can and will never get enough of them. There can’t be enough success stories, and I personally won’t give up until Ashlynn has one of her own.
What message or mantra do you wish parents of a child with CAS would repeat to themselves in their daily battles?
Oooh, I like this question. I always tell parents to remember, “You will encounter numerous experts on many, many different things related to your child in his/her life. Never forget though, that YOU are the expert on YOUR child. No one person, professional, or expert will ever know your child like you. They can make recommendations, quote current research, or give advice based on experience, but you have to listen to your mama or daddy gut, because at the end of the day, YOU and only YOU, know your child best.
Oh, and my other favorite, isn’t my quote exactly but I remember reading it and it has always stuck with me. “The days are long but the years are short.” I think this quote speaks to every parent because of course parenting is hard! It’s so easy to get caught up in the day to day stress and easy to forget this chapter in your life is only that. A chapter. In the end, your kid will keep growing. They will keep advancing ages and grade levels, apraxia or not. Try to remember to take a deep breath and enjoy the simple moments as well.
LAURA SMITH M.A. CCC-SLP IS A SPEECH/LANGUAGE PATHOLOGIST IN THE DENVER METRO AREA SPECIALIZING IN CHILDHOOD APRAXIA OF SPEECH. CASANA RECOGNIZED FOR ADVANCED TRAINING AND EXPERTISE IN CHILDHOOD APRAXIA OF SPEECH, SHE SPLITS HER TIME BETWEEN THE PUBLIC SCHOOLS AND THE PRIVATE SECTOR. SHE IS DEDICATED TO SPREADING CAS AWARENESS. HER PASSION IS FUELED BY ALL OF HER CLIENTS, BUT ESPECIALLY HER OWN DAUGHTER WHO WAS DIAGNOSED WITH CHILDHOOD APRAXIA OF SPEECH. FOR MORE INFORMATION VISIT http://slpmommyofapraxia.com/