[Note: This essay was selected as the winner of the 2007 August Wilson Essay Contest, in Pittsburgh, PA. Seventeen year old Kate Hennessy was recognized at a banquet of the August Wilson Center on Friday, May 18, 2007 and received an award of $1,000.00]
|One Microphone: $250. A Wooden Podium: $300. Speaking for the first time in front of a room filled with more than two hundred people listening to every word you say: Priceless. I had been asked to speak at a workshop held in Fairfax Virginia when I was in seventh grade, about four years ago. The workshop was on Childhood Apraxia of Speech, a very rare neurological speech disorder that affects between one to five children in every one thousand, (www.apraxia-kids.org). I had been asked to speak in Fairfax because not only am I diagnosed with CAS, but after seven years of intensive speech therapy, my Apraxia is resolved.|
|In a person who is not diagnosed with Apraxia of speech, the messages from his or her brain travels to the muscles in their mouth signaling how to move them in order to form words. However, with a child diagnosed with CAS, those same messages never reach the muscles, and so the child has to be taught the correct positions, for each and every sound, how to move his mouth in order to form words. What comes naturally to children learning how to speak is something that is very difficult to a child with Apraxia.|
When I was two and a half years old, I was diagnosed by our family physician as “developmentally delayed.” As the years have gone by, I’ve realized that this diagnosis is often given to people when the doctors know something is not quite right, but cannot seem to find exactly what is wrong with that person. After a few years, I was finally correctly diagnosed with Childhood Apraxia of Speech after my younger brother was first diagnosed with it. I was five years old. From the time I was two, I went to speech therapy five days a week while other kids played outside. Practicing my speech however was not something confined to the therapist’s office. We practiced everywhere. From the car, to the grocery store, anywhere you could think of, we practiced speech there.
It might seem as if my childhood revolved around speech therapy, and it did, to an extent. But I was still a regular kid who had tons of fun. My mom made it a mission to make sure that my brother and I were always having fun, no matter how many times we had to practice our vowel sounds. Speech therapy was just another thing in our lives and because of this, it never really stuck out to me. The way I like to think of it is that people tend to remember the big things in their lives; the things that really stick out, like graduations, birthdays, vacations. Speech therapy never seemed like it was a hassle or something that made us different. In August Wilson’s Fences he says, “Death ain’t nothing but a fastball on the outside corner.” Apraxia was not something that made me feel different from all the other kids. It was just another mountain to climb, or a fastball in the corner. I do not even really remember that much concerning therapy, well besides the tons of ice cream we would always get from the McDonald’s across the street after therapy.
Apraxia is something that will never go away. Though I am resolved today, it still affects so many different aspects of my life. I stumble on words here and there, but after I hear how the word is correctly pronounced, it seems to stay with me. One of the words I remember having immense difficulty with as a child was cemetery. That word took me days to learn how to pronounce. I remember sitting on my bed at night with my mother working through the word backwards, something that seems to work best for children with Apraxia, trying to help me learn how to say it correctly. Once I had the word down, it felt like the biggest accomplishment because of how long it had taken me to learn it. Another word was archipelago. Funny thing is though, my mother thought it was pronounced a different way that it truly was, and so to this day I always say it the way I learned it because that is how my muscles in my mouth were taught from the start.
Since that fateful first speech in Fairfax, I’ve been given the opportunity to speak at ten different events, ranging from workshops, parent meetings, and even national conferences, in nine different cities across the country. The first few times I spoke, my mother and I did a presentation together. I would always end up having to kick her under the podium in the hopes of reminding her that crying while speaking in front of people probably was not the best decision, no matter if she could help it or not!
I look at my success at having overcome Apraxia as a responsibility to inspire people, to give hope when it seems as if it is lost. When both my brother and I were diagnosed with CAS, my mother felt alone, as if she was the only parent going through all of the struggles because it seemed as if no one had ever heard of Apraxia. I don’t want any other parent to ever feel that way, and so I have made it my mission to make sure that parents know that there is a future in store for their kids; a future that does not include speech therapy every day of the week. I look at myself as an advocate for children with disabilities, and stick up for them when others do not truly understand what it feels like to have to work so hard for something that comes so easy for many. August Wilson states in Joe Turner’s Come and Gone, “Everybody has to find his own song. Now, I can look at you, Mr. Loomis, and see you a man who done forgot his song. Forgot how to sing it. A fellow forget that and he forget who he is. Forget how he’s supposed to mark down life…See, Mr. Loomis, when a man forgets his song, he goes off in search of it…till he find out he’s got it with him all the time.” I have found my song in life, and that is to inspire people and give hope when all else seems impossible. I’ve embraced all that there is about Apraxia, because it is a part of who I am, no matter what I do. I would never wish Apraxia was not part of my life. It has made me a more sensitive, aware, and caring person. I do not look at people and make judgments, because no one can truly get to know a person from the outside; it is their inside, their soul that truly matters.
I’ve met some truly amazing people and have even become friends with some of the top researchers in Apraxia in the entire country. I have so much respect for these professionals, because of all their dedication in helping kids like me gain a voice, and families, who never give up on their children. Like these incredible researchers and families, August Wilson was able to achieve greatness through hard work and diligence. His childhood was certainly not easy, and yet he did not give up because things were hard. He worked and worked to educate himself and make a name for himself when it seems as if the world was against him. August Wilson found his voice through his ability to write. Hopefully, with more research and hard work, kids with Apraxia will be able to find their voices, like I have.