Why Do I Participate in the Walk for Childhood Apraxia of Speech?

When Grant was first diagnosed with Childhood Apraxia of Speech, I was lost. My perfect little angel had a disorder that I, nor anyone else I know, had ever heard of. I was desperate for answers, guidance and support. I felt so alone in this world. I spent hours researching. In my research, I happened upon a facebook group called apraxia-kids. Thank God! There, I learned that we weren't totally alone. There were thousands just like us! In that group became familiar with the Childhood Apraxia of Speech Association of North America, the National CASANA Conference, and the Apraxia Walks. Still reaching for answers and support, I applied for a scholarship for the National Conference. I wanted the best opportunity to learn as much as I could about apraxia in order to help Grant. A few weeks later I was notified that I was a recipient of a partial scholarship which waived all but $80 of my registration fee. I was never more excited to pack my bags and head off on my own. It was tough, though. This was the first time I had ever left Grant for more than 36 hours. You see, conference lasts 3.5 days plus travel time, but tis trip was FOR Grant, so off I went. CASANA Conference... WOW! What an experience. To be surrounded by parents and professionals who all have one main thing in common - APRAXIA. They got it. They all understood and I didn't have to explain to anyone what apraxia was. We spoke the same language, and we shared the same goals. How inspiring! I learned so much about apraxia and being a parent of a child with apraxia that my head was swimming. The entire conference experience was so fulfilling that when walking out the front door after my last seminar, I literally cried knowing the experience was coming to a close. At conference, I learned about the many programs (including conference itself) that are funded by the apraxia walks. I met the walk "guru" (Justin LeWinter) himself as well as several walk coordinators and was inspired. I had to see what this apraxia walk thing was all about. That year, there was not a walk in Oklahoma, so Grant, my sister-in-law and I loaded up and headed to Dallas to participate in their walk. Again, wow! This time, not only was I surrounded by parents and therapists but also KIDS with apraxia! Grant had the opportunity to meet and play with other kids who were a lot like him. The day was all about the apraxia superstars! There were several fun activities for them before the walk. All of those who walked were walking in honor of these children and all of their hard work. After the walk came the medal ceremony - a moment I will never forget. When Sarah placed the medal around his neck, he beamed with pride. He was being recognized, not for being different but for the hard work, determination and tenacity it takes to battle childhood apraxia of speech. He always has been and always will be a super hero in my eyes, but that day he was a super hero in everyone else' eyes as well. CASANA is a fantastic organization headed up by loving, big hearted individuals who have "been there" and understand the struggles of children with CAS as well as the struggles of their parents. I walk to help raise funds so that they may continue the many programs they offer. I walk to be surrounded by other families and children who "get it". Mainly, though, I walk for my super hero, Grant. May he always leap tall buildings in a single bound and soar high above all expectations. I walk to help him beat the villain called apraxia.

Let's Go Fly a Kite, Mom

Grant received a small kite for Easter and has been anxiously awaiting going outside and flying it. This evening was fairly breezy so I told him we would go out and fly his kite. I put the kite together and ran up the driveway trying my best to get it to take flight. Just as it was gaining some elevation, Grant grabbed the tails and down it came. He was excited and I was aggravated. I picked the kite up to try to get it flying again. I told Grant to leave it alone and let me do it. He ran along side of me begging, "I help, mom. Me do it, mom." I explained it wasn't as easy as it looked. Up and down the driveway we ran. I was trying so hard to get the kite to fly high in the sky so I could hand over control to him. That's when he taught ME a lesson. He looked at me and said, "Let do, mom. I do it." He picked up the kite and string and took off running. The kite flew - not very high, but he was doing it on his own. It was beautiful and he was so proud of himself. Yes, I need to let go a little more and let him "fly" on his own. It may not be very high, nor for a lengthy amount of time, but it will be HIS way, and his way is perfect. Oh that boy... I love him so!

You prayed for this...

You prayed for this... I kept reminding myself as everywhere we went yesterday Grant asked "what's that?" "What say?" After answering what seemed like a bazillion what's thats I responded with "I don't know Grant. You tell me. What is that?" He responded with "pop truck" while pointing at the delivery truck sitting outside the Pepsi cola bottling company. This morning I was playing around swinging a sock back and forth at him like some sort of ninja when he challenged me "Oh yeah?" and came toward me. Then he stopped and said "Han me a sock" I couldn't help but laugh. Oh yes! I. Prayed. For. This!!

The Shepherd Who Stole the Show

Tonight was Tannehill School's Christmas program. An excerpt from the story was read followed by each class singing two songs. The pre-school and kindergarten were dressed as characters from the manger scene. Grant was a shepherd. Programs have never really been Grant's thing. He can't sing the words to the songs. His global apraxia (which affects all motor planning) makes it difficult for him to do the arm motions. In my eyes, if he stands on stage and faces the right direction and keeps from distracting the rest of the class, it's a success. Tonight was pretty successful. Ms. Wendy only had to re-direct him a few times through his classes portion of the program. He stood on the riser facing the front (most of the time) and in the end of the second song, even attempted a few of the motions. However, Danny and I could sense trouble brewing. We could see the gleam in his eye. I am not sure who decided to have him stand on the riser instead of on the stage, but that is neither here nor there. As his class was exiting stage right, Grant had been good as long as he could stand it. That's when he launched himself off of the risers on stage left, landing on his stomach on the stage. The whole crowd gasped (except Danny and I). Ms. Wendy rushed to his aid. As she was picking him up, Grant looks at me with a GIANT grin on his face and yells, "I FINE, MOMMA!" The crowd burst into laughter and applause. My mom and I laughed until we cried. Oh that boy! Many may not realize it, but those three little words that Grant yelled were HUGE! H U G E ! ! ! Yes, he caused a "scene", but I couldn't be more proud. For an apraxic child to be able to put together a spontaneous, complete sentence and yell it out in front of a crowd of hundreds is amazing and a fete to be celebrated! There were several there who understood the greatness of the moment and commented on how clear his speech was. Those comments and understanding blessed this little momma's heart more than words can describe. You see, part of those tears that were shed by me were of pride and thanksgiving. One word, one sentence, one "scene" at a time he is getting there. He is beating apraxia. Oh. That. Boy...

Halloween 2014

Best Halloween yet! Every year, I have picked out Grant's Halloween costume. I have asked him if he likes what I picked out and he has always said yes. This year I was looking at costumes and was sure he pointed to a ninja turtle costume. I had it in my mind that is what he wanted to be, until about a week and a half before Halloween, that is. We were in the car and I asked him, "You want to be a ninja turtle for Halloween?" To which he replied, "No. Inon Man." I asked him again and received the same response. For the first time, ever, he was able to tell me what HE wanted! Luckily Wal-mart had an Iron Man costume. I would have had one over nighted if I had to. Grant LOVES Halloween and everything there is to it. He loves the decorations and the mystery. This year he added new phrases. It spooty for it's spooky and it stareded Drant for it scared Grant. I love hearing him say them. His trick or treat is much clearer this year as well as his thank you. This year when trick or treating he would try to name whatever character handed him a treat (if they were in costume) - tant you dog! At school, they have a costume parade. All the students and parents gather in the gym. Each class goes on stage and then each student tells who or what they are dresses up as. Last year, Grant was unable to say batman, but this year... Oh this year... He proudly stood in front of everyone and announced"I Inon Man!" He's my little SUPER HERO!!!

A Strange Breed of Parents...

Apraxia parents are a strange breed. Why, you ask. We are the only parents on earth who celebrate when other parents would be thinking of punishment. How many parents do you know who celebrate when their child says a curse word? Apraxia parents do because it is a new word or a new sound. We live to hear each and every new sound and word. At times, we are known to celebrate when our kids get into trouble at school. Grants teacher uses an app called class dojo. This app enables her to post updates throughout the day regarding each students behavior/progress. The parents can look at their child's report on their mobile device. Positive marks are green and negative are bad. Grant and I always discuss his marks. He knows the difference in the colors. One day not too long ago and found a red mark. I was disappointed until I saw what it was for - talking out of turn. TALKING!!! I tried my best to reprimand Grant for the red mark, but I just couldn't.

Boys Will Be Boys

So Grant got into trouble today at school. For the first time ever, he was able to tell about it. When I asked him what he did, he said, "Push. hit. Box." After speaking with his teacher I learned he pushed another boy into he storage cubbies when they were getting their supplies out. While I was not happy about the incident at school, I was overjoyed that he was able to tell me about it. Later in the evening, he and Danny were home while I was at a meeting. As a result of the bad behavior at school, Grant was not allowed to watch tv and therefore had to keep himself otherwise entertained. Danny was feeding the chickens when Grant came running around the end of the house yelling "Fwy away! Fwy away!" while throwing something up in the air. Danny went to see what it was that Grant was tossing in the air, only to discover it was a dead bird he had found in our driveway. Oh that boy...