When I Grow Up

Before Grant's graduation from kindergarten, one of the moms took these amazingly adorable pictures of each student in a graduation cap and gown. In the pictures they were holding a chalk board with their answer to the question, "What do you want to be when you grow up?" written on it. On Grant's was written "wrestler". Since we rarely watch wrestling at our house, I am not certain Grant knows what a wrestler is, nor am I certain he can physically pronounce the word. I figure when asked the question, one of two things happened: 1) they could not understand what he said in response to the question or 2) he didn't answer and they took a wild guess based upon his personality (after all, he is a bit rowdy). None the less, know one knew the true answer... That is until today! Lately, Grant has been fascinated with the fact that his dad is a police man who catches bad guys. We were driving past the prison when he asked me, "Poweece, mom." I explained that no, that place was a prison and prisons are where the bad guys had to live after daddy caught them. That's when he said, "Me, Drant, a Poweece. I tatch bad duys, momma." I asked him, "Do you want to be a policeman when you grow up?" To which he replied with a huge grin on his face, "Yes. Tatch bad guys!" Oh that boy...

This Little Light of Mine

May 14, 2015 - the third annual National Apraxia Awareness Day. I sit here trying to wind down after a hectic day filled with love and support for Grant and for Childhood Apraxia of Speech. I think about when this apraxia journey first began over 3.5 years ago, and I sit in amazement. everything has changed - for the better, of course. Grant's speech has greatly improved. I have gained a great deal of knowledge about apraxia and have learned to be a better advocate for Grant as a result. Grant has taught me endurance, commitment, dedication, resilience and love like I had never imagined. there are days where I hate apraxia, but not today. because of apraxia, today I felt love and support from far and wide, and for that I am humbled and blessed. However, there is one thing that has not changed. That is the light that shines within Grant. Since he was born, there has been something special about him. As an infant, he had the ability to charm young and old with his sparkling blue eyes and oh so precious dimples. As a toddler, he was able to bring comfort to those during the most difficult of times - with just his presence. Now as a child, he loves like no other and spreads happiness and joy far and wide with his infectious squealing laugh and freckled smile saturated with orneriness. He touches so many using so little words, but there's this light... At his kindergarten graduation, I watched in anticipation (reference the shepherd who stole the show post). Grant and his classmates were on stage performing to two songs. I wondered how he would do. Would we have a repeat performance of the leaping shepherd? Would he face forward the whole time? Would he be able to do the motions or mouth any of the words to the song? What I witnessed that night was one of the most breath taking performances. I can't tell you what the second song of the program was because I still had tears in my eyes from the first one and was still in awe of the revelation that came to me through Grant's performance. You see, the first song was "This Little Light of Mine". Each child held a battery operated tea light candle in their hands as they sang. They were supposed to hold it high up in their hands, but not Grant. He held his little light shining close to his heart. It matched the light that he has coming from within. I know I need to take more time to just step back and see. Grant's little light may not shine in the way his classmates' do, but it shines and it shines perfectly his way. Oh that boy... I love him so!

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!!!