Today begins National Autism Awareness Month. I remember a time when my only reference to this word conjured images from the movies; Son Rise and Rainman. My how that changed for me after the birth of my first son, Shawn.
My first child. My beautiful baby boy. The light of my life who I had longed and prayed for for years. Who made me love to the limitless levels that I hadn’t even known existed. He was perfect in every way, especially to my husband & I and our families. His smile lit up the room as much as it filled up my heart. He giggled, loved and played just like most babies. As he aged towards becoming a toddler each milestones achievement along the journey wasn’t on schedule. I also noticed differences that I couldn’t quite nail down, but just knew, something was “off”, “different”, my friends had babies the same age and my heart ached to hear him say Mama. The months went by and Mama never came...
Doctors told me, "boys just talk late". I fought to get services. I was expecting my second child and wanted base line tests before the regressions that are natural with the arrival of a sibling. I fought and fought and fought. With my husband, Steve, we fought, and fought and fought. None of it ever coming easy. Medical tests. Genetic testing. Hearing tests. MRI’s. Endless paperwork with torturing fill ins where you choose; “always, frequently, sometimes, never”. Doctors, doctors, doctors. Evaluations. Observations. Neurologist visits. Speech Pathologists. Occupational therapist. The list could go on and on.
Then there was Terry, who I first met at a support group for Moms who had children with developmental delays. After about five minutes, with my then toddled she questioned, “Has he been diagnosed with Autism?” Autism. The word had entered my head a “million” times. (Often enough that I had researched it and questioned the pediatrician, who again disregarded my concerns, “Boys are slower, sometimes”.) This was the first time someone else had dared to speak the word I feared. Terry was the angel that dared me to look at the darkness and also shined hope on the path to light and knowledge. She was (and is, and forever will be) my first HERO in the journey through the silence.
In the weeks and months that followed, I fought tooth and nail for help and answers. Knowing it would break my heart as much as it healed it. I fought because my son needed and deserved every service and help that I could find for him and it was my job to be his advocate.
Once you hear, “Your child has Autism Spectrum Disorder (ASD)”, your journey has changed. It's journey through the silence, that begins with running from the jagged edges of a broken heart. A walk you can only understand if you've waited 34 months to hear "Mama" (or have never heard it at all), or you've been told "your child will never attend a "real" school because his IQ is 67". (Yet at three, my son could read books but not "talk".)
There is so much more to be said and told of this journey with Shawn - enough to fill endless blogs. To be said and told of the journeys of those whose lives have been touch by Autism Spectrum Disorder. Autism affects one in 110 children. One in 70 boys. Although some would argue it is not an epidemic, you cannot convince me otherwise. Autism is not a disease - our kids just think differently. It is a processing disorder. One that can change everything. It can tear families apart. Financially destroy them. Sever friendships. I’m not sure you can find a person today who does not know someone whose life has been touched by and or changed by Autism.
In many ways, ASD changed everything in my life. Autism expanded my views of compassion, tolerance, and advocacy as well as making me a better person in the process. I am incredibly blest and lucky. My eleven year old son is an incredibly happy, smart, and “high functioning” little man. In addition to all the challenges that came with ASD, Autism also made me acutely aware of the angels in my life. I have friends and family who never turned away. Who went to support groups with me even though their kids were “normal”. Who taught me how to be an advocate. Who shut gates for me at playgrounds - because Shawn was a “runner” who didn’t answer to his name. Who would stay with me into the darkness of the night at the park because Shawn “needed” to swing. Who would still invite me to play groups even though Shawn didn’t “play” but would create endless lines of matchbox cars and horde magnet letters. Who watched him draw chalk portraits again & again, then listened with love as he repetitively "labeled" the names of the people drawn. Who spent countless hours with me, at places with ball pits, because despite their lack of "perfect cleanliness" they provided good sensory play. Who would help their kids understand. Who understood because their kids were “spectrum” too. Who would be angry and grieve with me. Who held me when I wept. And, cried with me when he spoke.
Everyone should be so blest! You know who you are.
I thank you one and all - From the depths of my heart,
I WILL FOREVER LOVE YOU AND THANK YOU!
Today & tomorrow I will wear blue. For Awareness. For Shawn. For the friends in my life who walk this journey in similar shoes and their children (I'd love to name you all). For all of those who live in a world with Autism. For a world that needs more understanding and awareness. Won’t you join me? How will you light it up blue?