Meet my nephew Charlie. He loves poop jokes, loves to make a mess, loves to paint, loves to ride horses and loves hanging out with his family. He's almost 6 incase you couldn't guess it. He thinks everything is hilarious, so naturally he's my favorite audience. His smile literally takes over his entire face. It's the best. He wants to work at Silco some day like his dad, his uncle and his grandpa. He has his own business cards, his own calculator that spits out the calculations on tape (jealous!) and when he's not matching his brother Henry, he's wearing a Silco t-shirt. He is full of energy. The kid never stops!! He's such a busy bee. Charlie also has Apraxia, which means despite living life in full throttle, he has to take life one word at a time. This past Sunday we got to celebrate Charlie and other super star kids with Apraxia at the Apraxia Awareness Walk here in downtown Cincinnati.
Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. Basically his brain has a full vocabulary, but something often misfires between the brain and the mouth. Sometimes he walks into a room and says "Hi Aunt Betsy" (I die) and sometimes it's a bunch of different sounds. In order to overcome Apraxia Charlie goes to a ton of therapy to teach his brain and his body to work together. Here is a day in the life of Charlie:
6am wake up
6:30 am leave for therapy, eat breakfast on the go
2:00: music therapy
This almost 6 year old works harder than many grown adults. He is a warrior and he is on a mission to tell us his story. He has made such progress, but has a way to go! I think about Charlie all the time. As my sister in law said, How do you make a friend if you can't say your name? Why would you raise your hand to answer the question if no one will understand you? How will you fit in anywhere if you can't connect with those around you? As his family I can't help but be like a ferocious bear on the watch out for my loved one, but Apraxia has never stopped Charlie. He is the happiest kid I've ever met. I'd have to think long and hard to remember him in a bad mood. When we do Sunday dinner at my parents farm he holds his own with his cousins. He's right there with them swimming, running, riding, golf cart driving, mess making, pizza eating, causing a ruckus and having fun. He's an awesome cousin. Not only is he silly and kind, but he's such a fantastic example to my kids about what it means to be different. My kids learn first hand that being different doesn't define anyone. Charlie defines himself with his bright character, relentless hard work and love of life. I had an Aunt who was paralyzed in a car accident before I was born. She went on to have a family, to continue to ride horses, to travel and she even went to Barcelona for the Paraolympics where she won a freakin bronze medal in rifilery. I never knew her to be anything but fearless, amazing, humble and cool and I see that in Charlie. I can't wait to see all that he grows up to be!
Here are some pics from the Apraxia Walk, where we celebrated Charlie for his differences, his hard work, his awesome attitude and his killer smile. It was such a fun day spreading awareness for Childhood Apraxia of Speech and raising money to provide resources and education to help children find their voice one word at a time.
This is one proud Aunt, signing off. Go Charlie, go! Love ya, buddy!!