Apraxia Walker Spotlight: My renewed faith and hope in my Shining Star by Jenny Boncich
It goes without saying that all my babies are amazing and wonderful! It’s true. When
I delivered my 3rd child, I didn’t know it at the time, but I had just given birth to a star! A shining STAR! I know, I know, every woman believes her child is a star! But the kind of star I am talking is pretty special. My son Mark was born with Childhood Apraxia of Speech (CAS). CAS is a neurological motor planning disorder. In a nutshell my son’s brain isn’t able to send the right messages to his mouth, lips, cheeks, jaw, or tongue; so he has great difficulties in executing intelligible speech. His words are understood by only about 65% of unfamiliar listeners. In addition to coordinating his speech, our son also has great difficulty globally with his body movements. That means he struggles with coordinating all of his body, and that just plain SUCKS!
At about two years old I noticed the beginning of Mark’s symptoms. No babbles, not walking, etc. I turned to our pediatrician and as much as I loved that man he didn’t have a lot to offer. A doctor is supposed to know EVERYTHING! What the heck was I to do?? Oh yeah… GOOGLE THAT S*$%!! I surfed the web hour upon hour upon hour. I was in the fight or flight mode. I needed to put on my suit of armor and begin the good fight! In doing so, I stumbled upon CASANA. Thank God I did! As I began reading the family start guide I just kept nodding, “yep, that’s Mark. Uh huh that’s Mark. Why yes….that’s my kid!!!! I took all the information I had devoured and went back to our pediatrician with the diagnosis. He was as humble as he could be and said, “You’re onto something here!” He even let me wear his stethoscope for a few minutes, as it was I that delivered the diagnosis (I’m just kidding). Over the next couple of months, together we started making the necessary appointments to have him professionally diagnosed by starting Speech Therapy and Occupational Therapy.
What got me through those first few years were other parents of children with apraxia, my rock solid husband and friend, and CASANA. It felt good to know I wasn’t alone in this journey. There were other families out there enduring the same things. What helped me get through this were other Facebook groups. I became educated and encouraged. It wasn’t long before my family began participating annually in CASANA’s awareness walk. I really looked forward to CASANA’s annual Apraxia walk, as it was a time we celebrated Mark and all the hard work he done throughout the year. We walked with our family and friends and it felt GREAT! It was Mark’s day to SHINE like the star he is.
However…..
The years have continued to come and go. My son is now 11. We have climbed many MOUNTAINS. We do live in Colorado so that isn’t too amazing. However,
I’m not talking about a 14’er. I am talking the things most of us parents of typical children take for granted. Crawling, walking, babbling, cooing, coloring, writing, potty training, tricycles, 2 wheeled bikes, blowing bubbles, buttoning, zippering, tying shoes, play dates, sports, and singing. The list is literally ENDLESS! Every single thing has been a CHORE for my child. And I began to get really pissed off about it. It began to sink in that this was a more severe diagnosis then that of most children. I saw many of the kids that I first met on walks beginning to resolve the issues they had with Apraxia, while my son continued to have such slow progress. It all became too much. Denial after denial from insurance companies, and then ultimately thousands and thousands of dollars in private speech therapy, battle upon battle in conference rooms during our annual IEP meetings fighting for what seemed to be so obvious in what he needed and deserved, the constant stares from strangers, one even asking, is he death?” (Wanting to say, “No, he’s alive…oh, did you mean deaf?”) But instead answering kindly, “No he’s not deaf but we use sign language for expressive communication and…..blah…..blahhhh, blaaahhhh!”
UGH! “Make it all stop!” I would scream in my head! It was obvious that the once very optimistic part of me gave into the GREAT APRAXIA MONSTER, and I became a very cynical, defensive and angry woman. I actually withdrew from the people and things that once made me feel like we were not alone. Last year, I purposely and proudly boycotted the Annual Apraxia Kids Walk. There take that! I am done. I’m going to take our toys and go play somewhere else. Very immature, I know.
That is until I was fortunate enough to come across a very well written blog from a woman I had sat next to in one of CASANA’s conferences. The one in Denver a couple of years back. I remembered her because I thought how LUCKY her daughter was in having a mom who was an SLP!! If you’re going to have an Apraxia diagnosis, how blessed to be born to a mommy who knows how to help you from the get-go!
I began reading Laura’s blog about how she and her daughter Ashlynn got to go to a book signing. The book was about a woman wrestler. A BEAUTIFUL woman wrestler, Ronda Rousey, who not only wrestled in a ring with opponents, but that also once wrestled with WORDS! The book was written about a famous person. And this person once had APRAXIA too! As I was reading the blog, I could literally feel the excitement and passion Laura had experienced in her meeting with someone that once had what our children are struggling with. She overcame Apraxia, and then went on to lead a very successful life….despite her early struggles with Apraxia.
And that’s when it happened.
Because of this one very simple, loving, blog I began to cry. TEARS? Yes Tears! And lots of them! Happy ones. Because it set in motion a familiar feeling in my stomach, like that of a roaring fire. A roar that made this mom want to start fighting the good fight again! That post not only helped me regain faith, it also restored hope in the fact that my son will someday resolve his struggles with Apraxia.
Thanks to Laura’s enthusiasm spilling over and onto me, I am VERY proud to say, “WE ARE WALKING” in CASANA’s walk this September. We have invited our friends and family to once again rally around our SHINING STAR and make the day all about him. We look forward to celebrating his amazing resilience, stamina, and success. I can’t wait to get TEAM MARK THE SHARK back on the track… in oh so many ways!
