In Their Own Words – What Does Autism Mean to You?
Derrick is the father of two wonderful children, one of which, Lucas, as autism. He is a devoted member to the autism community, and has been involved in activity for years. He and his wife, Sandrine, created the South Carolina Autism Services Directory to help parents locate services available for autism, and The LUCAS Network (Loving Unconditionally Children with Autism Support). He is also the Family Services Liaison for Autism Speaks in South Carolina. Derrick succeeded in getting two buildings in South Carolina to “Light It Up Blue” this year, and has worked to light up the BMW Zentrum Museum2011 Campaign.
What does autism mean to you?
What would your answer be if someone asked you this question? I guess it would depend on how you have been personally affected by autism. But instead of focusing on all the different answers someone else would possibly give, let me answer the question from my point of view.
Autism means so many different things to me. It is at the same time my salvation and my tragedy. Autism came into my world back in October of 2001 when my son was diagnosed. At that time, it was the end of all the dreams I had in my head of what my son might become. It was a time of entering into an unknown world full of alien language and signs I could not read or understand. I entered into a completely new culture in which I had to learn by trial and error. Living in France and Austria in my early 20’s did nothing to prepare me for this new world. The movie Rainman was so far from my reality. Every parent I met that had a child with autism had a child that was so different from mine. My wife bought books to read and asked me to read them as well. I would pick them up and start and then put them down again. I could not wrap my head around what I was reading. It was as if it was written in Chinese. I just could not accept this world that I had been thrown into and was being forced to be a part of. For two years I fought and refused to accept this thing called autism. I could not accept being told that my son would never talk or get a job or drive a car or go to his high school prom. I was tired of being told what my son would never do. How dare they! How the Hell could they know what he would become! Then finally, depression set in and although I tried my best to hide it from my wife and family, I gave up for a few months. I think that Lucas could sense the despair because just when both his mother and I would think he would never do this or that, he would do it the next day to show us that he could. After about a year of ABA we finally started seeing some signs of progress. Slowly at first but then he would have a burst, as we would call them, of progress. I could see the real Lucas struggling to come out from behind the veil of autism and I saw for the first time my son, his desire to be seen and heard by his father and to have his father fight for him as he was fighting for himself. From that moment on, my way of viewing autism changed. It went from being my worst nightmare to my saving grace. As I have watched my son grow in all senses of the word, I have seen a child so full of love, so innocent, and so strong of will attract one person after the other into his life and the impact has been enormous for all of us who have been lucky enough to have him in our lives. To know Lucas is to love him. His strong will to succeed has transformed me into a father that will have the same will and determination to advocate for Lucas and others like him until the day I die. Now, although I still wish my son did not have autism, I cannot imagine my world without Lucas as he is. Autism to me is that one piece of the puzzle that you know is there but have not yet found; but you know when you do find it and complete that puzzle, you will have the most beautiful and complete picture you have ever seen. For me and Lucas, together we are putting those puzzle pieces in place one piece at a time and although we are currently only half way to finishing that picture, together we will continue to put the puzzle pieces into place.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.