I Am an Advocate for Autism Awareness: I Am a Mom

I Am an Advocate for Autism Awareness: I Am a Mom

Overview

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~By Kat Rina Davis

If someone would have told me 10 years ago that I would be an advocate for a noteworthy cause, I would have thought they were crazy. I mean, the title alone surely signifies one of great notoriety; someone of great stature and popularity within one’s community, right? Well, as these are truly fundamental qualities to hold, the fact of the matter is that an advocate looks like you and me; moms and dads, grandmas and grandpas, sisters and brothers, caregivers, etc. An advocate is someone who: is committed to change; is willing to publicly share or recommend their commitment and support for their cause or policy; and is
eager to increase their knowledge and understanding of the issue. Simply put, an advocate is one who is resilient and willing to fight the great fight and declare victory— never giving up and never taking no for an answer.

In 2006, I was graced with said honorable title when our Perry (PJ), was diagnosed with autism at the age of two. At that time, I’d never heard of autism or autism spectrum disorder (ASD). However today, I know that both autism and ASD are general terms for a group of complex disorders of brain development including: pervasive developmental disorder not otherwise specified (PDD-NOS), Asperger syndrome, and autistic disorder. Autism is a neurological disorder on the spectrum that can cause significant social, communication and behavioral difficulties. These disorders are characterized, in varying degrees, by difficulties in verbal and nonverbal communication and repetitive behaviors. Studies show that ASD is almost five times more common among boys than among girls. According to the U.S. Centers for Disease Control and Prevention (CDC), an estimated 1 in 68 children (1 in 42 boys and 1 in 189 girls) are diagnosed with autism in the United States.

Although it’s been eight years since PJ’s autism diagnosis, it seems as though it was only yesterday that I received a phone call I’ll never forget. I had taken my son to visit his pediatrician after noticing developmental delays of some major milestones, i.e. speech, motor skills, and social interaction (no eye contact), just to name a few. At that initial visit, my son’s pediatrician conducted a brief evaluation and recommended that we see a specialist at the Kirch Developmental Services Center at Golisano Children’s Hospital for a more extensive evaluation. And then he said it, “I believe your son is suffering from autism. “What is autism?” I asked. Well, needless to say, by the end of that visit I was numb from shock and utterly confused. Tears ran profusely down my face and my thoughts spun out of control; I lost it.

In spite of my immediate devastation, I didn’t waste any time scheduling an appointment with Kirch. PJ was evaluated a second time and my family and I awaited the results via postal service, but received a phone call instead. And there it was. The specialist from the Kirch (who I’ll refer to as “Dr. A”- for angel), was on the other end of the phone, confirming my nightmare with four little words—“Your son has autism.” She apologized for calling my home so late into the evening (from her home mind you), but explained how she wanted to chat with me before mailing out the evaluation summary. Dr. A continued on with her written report via telephone and delivered yet another unforeseen blow. Not only was my son diagnosed with this disorder I’d learned of just a few days earlier, she was now telling me that my two-year-old toddler’s mental level was that of a three-month-old infant.

Dr. A delicately explained to me how many children on the spectrum have delayed speech, if any speech at all. She told me that there was a possibility that I may never hear my son speak, but that she was optimistic. The thought of never hearing my only son call me mommy tore me to pieces, and I lost it…again!

Once the desolation subsided and I had a chance to take it all in, I knew there was a lot of work to be done and quickly. So I started doing my homework and came across the Monroe County Early Intervention Program (MCEIP). This program was a Godsend and I honestly don’t know what we would have done without them. We were given a Service Coordinator who accompanied me to my first CSE meeting, helped me with the IEP paperwork and lead me to a host of networking platforms. MCEIP also connected us with a multitude of beneficial organizations and institutions, like Stepping Stones Learning Center, where they successfully practice Applied Behavior Analysis (ABA) techniques.

 

As time went on, my family became more and more involved in the autism community. Attending conferences and seminars became second nature. In 2008, along with our three children, friends, and other family members, my husband and I formed a team of walkers (PJ’s Crew) and joined Autism Speaks in their annual Walk Now for Autism fundraiser. Although PJ’s Crew has gotten smaller in size over the years, we continue to walk annually and raise money to contribute to the cause. Always thinking
of interesting ways to raise money for autism awareness, I decided to write a children’s book. Have You Seen My Birthday? is a fundraiser book written and illustrated with the preschooler in mind. It has an adorable theme and is an easy read. In 2010, the book received a Community Partner Award from AutismUp (previously known as UNYFEAT) for its contributions to the organization.

This once foreign place that my family and I had involuntarily embarked upon had become our new normal. Although life changed from what we knew it to be, life was and is good! My son being diagnosed with autism didn’t mean the end of the world for my family. In fact, it proved to be the opposite. PJ having autism opened up a whole new universe for us; one that we embrace and are so very proud of. My son is an extremely bright and talented 10-year-old little boy who has mastered multiple
milestones. Early intervention prepared him for a successful mainstream education within the Rochester City School District where he soared. He currently attends Churchville Chili Elementary via Boces 2 and will be entering the fifth grade come this fall. He has a smile that lights up a room and steals hearts. He’s a great dancer, a lover of all things musical and can hold a tune like nobody’s business. PJ writes original songs and short stories in his journal daily and is fascinated by geography. My son is a genius in his own right and adds a special kind of magic to our atmosphere. We love our little guy bunches and wouldn’t
trade nor change him for nothing in the world.