How to begin my story; it’s hard to put all of the emotions and feelings I have into words. This is a very personal journey for me and my family. I am very blessed and honored to be able to be part of the team running the 2018 NYC Marathon for the Organization for Autism Research (OAR). I see the effects of Autism every day in my son, Caleb. I run for him.
My twin boys are my world. Born prematurely at 33 weeks, they have had struggles from day one. We started noticing differences in Caleb from a few months old. Caleb would hum himself to sleep as an infant, as a new mom, I thought this was fantastic. Little did I know that this self-regulatory behavior was a sign of Autism. Caleb would spin on his hands and knees, roll his eyes, walk in kneeling and hold toys very close to his face. His walking and speech were delayed compared to his peers. As time went by, we realized something wasn’t quite right. He had trouble relating to his peers (except his twin) and developmentally was always behind. Through years of physical, occupational, speech therapy and special education resources, we finally had a diagnosis at age nine: Mild to Moderate Autism Spectrum Disorder and Attention Deficit Disorder. As parents, it was hard to swallow what we already knew. It’s still hard, at age 12, we see the struggles he faces every day.
Caleb is a very smart and gifted child. He started reading before he could speak. If you read him a story and missed a word, he would stop you and point to the word you missed. He started playing trumpet at age 9 and to see him play is amazing. His whole world is music. Caleb’s involvement in band has been the best social activity for him. He works collaboratively in a group, has to share his music stand and is a leader in his section. He picks up music so quickly, it baffles us. Caleb’s social struggles are real and affect every day of his life. Caleb continues to use vocalizations or sound as a self-regulatory behavior and his peers (including adults) constantly shun him. Caleb is fixated on time and routine and struggles deeply when there is a change to his normal routine. Caleb knows he is different, which is painful as parent to watch. With all of this, Caleb is the happiest, most loving child a mom could ask for. He loves deep hugs, snuggling and quite time. He loves to read anything and everything. Caleb is a huge fan of jazz music and loves nothing more to sit as a family and enjoy music.
Then there is my Ezra, Caleb’s other half and biggest supporter. Ezra has always been a worrier, an “old soul” in a young body. He wears the weight of the world on his shoulders. Ezra too struggles to fit in to this world we live in, but in entirely different way than Caleb. Ezra struggles with anxiety, crippling at times and paired with anger. Ezra just sometimes doesn’t understand how to relate to people. The answer came a year ago, when he was diagnosed with Non-Verbal Learning Disorder (NVLD). This is also considered on the Autism spectrum, but presents totally differently than Caleb’s struggles. Ezra’s view of the world is black and white and we live in a world of grey with inferences and ever changing emotions. Ezra’s passion (which still amazes us) is theatre. He loves nothing more than to be someone else on stage. It makes total sense to us, because in theatre the world is scripted and he can perfectly understand the world around him. In life, nothing is scripted and he finds it frustrating and anxiety provoking.
I knew when committing to run a marathon, that I needed to support my boys and the countless other families who live with Autism. The mission statement of OAR spoke to me. OAR provides support to families, educators and uses research to improve the lives of those living with Autism. I have committed to raising $3,000 for OAR, to run the NYC marathon. Any help you can give is appreciated. Please spread the word to your friends and family. My boys and I appreciate it. Every dollar counts.
Thank you for taking time to listening to my story.
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