By Tina Dula
April is Autism Awareness month. I live aware year round because my son, now thirteen, was diagnosed 11 years ago. It has been a rough road in many ways. I don’t give self-pity much place, but I am human. There are days when I mourn what Autism has taken from me. Certain dreams and expectations seem less likely the older my son gets. I don’t ever give up, but our journey is this delicate balance of defiant hope and radical pragmatism. I need both to survive.
I thought that today instead of mourning what Autism has “taken,” I would celebrate what it has given me. A kind of thank you note to Autism.
1. The Answer Is Not No
I’ve always been feisty. The kind of girl quick with a quip, and sassy with it. This journey required more than sass. More than bravado. I had to learn to fight. For everything. For every word my kid has ever spoken. For every skill he learned, lost, learned, lost, learned…you see the pattern. For every service someone thought they would deny him. Even before the diagnosis, class was in session. Every developmental pediatrician I called to figure out if my son did indeed have autism, had an 18-month waiting list. When a condition explodes the way autism has, everyone has to wait. I called every day for more than a month, bugging the poor receptionist. I called so much I think she recognized my breath before I would even speak. But you know what? That persistence; that refusal to accept less than what my kid needed when he needed it, paid off. And after that first month, we had an appointment and we had a diagnosis. That lesson serves me well in everything I do. I know sometimes the answer actually is “no”, but I approach every situation as if I just might get a yes. Dwell in possibility, Emily Dickinson wrote. I don’t know that I always did, but I do now. Thank you, autism.
2. I Don’t Give A Rip
My kid makes weird noises. He has a little bit of a facial tic. He bounces around and squeals. When he was a small child, it was awkward. Now that he is 5’10”…well, it puts awkward to shame. I’ve gotten so used to it, most of the time, it barely registers for me anymore. We used to have a hard time in public. Still do sometimes, but now I don’t get embarrassed. I can’t remember the last time I was embarrassed because of the noises and the faces my son makes. Do people stare? Yep. And sometimes whisper? Yep. And occasionally find the boldness to approach us, sometimes with rude comments? Yep. And you know what? I don’t care. He has just as much right to be in the grocery store or Target or wherever as the next person. Don’t get me wrong. I monitor his behavior, and make sure he disrupts as little as possible, but the opinions of others will not define my family. Will not determine where we go or what we do. That hard-won I-don’t-give-a-rip serves me well in life. From time to time, other people’s opinions bother me. I mean, again. Human. But for the most part, the opinions of others won’t shape or shake me. Thank you, autism.
3. A Deeper Voice
This is a biggie. It may have affected me as a writer more than any other. I’ve always had a way with words. Most of you reading this probably do, too. I didn’t always have a way with people. I’m an extrovert, but I don’t know that I was much of a people person before. I got impatient. Looked out for myself more than others. Cared more about tasks than people. Autism, in a lot of ways, slowed me down. So many aspects of the condition quickened my pace to the point I couldn’t keep up. Insurance companies, therapists and doctors, at-home treatments, funding opportunities. The list really never ends. But in a lot of ways, it forced me to stop. My kid needed undivided attention. Or sometimes, just time by the river. He, like many kids on the spectrum, is obsessed with water. EVERY summer evening, we are at the pool, the fountains, a puddle. There will be water. A couple of summers ago, it was the Chattahoochee River. He would frolic and explore in the river and across the rocks until the sun went down. My husband was traveling a lot that summer, so it was often just my son and me. And sitting on the riverbank, watching him (in the shallows!), my thoughts would settle until all I heard was the rush of water. That river returned something to me that summer. I hadn’t had time for my imagination in years. The characters who had always populated my head had gone completely silent. I thought dead. That summer, sitting still, watching my son, my voice came back, only it wasn’t the same. It was deeper than it had been before. It judged less. It didn’t expect perfection from the characters in my head. It loved unconditionally. All things the years raising my son had tutored me in. I wrote my book WHEN YOU ARE MINE by that river. It was originally titled River’s Promise, but hey, market knows best, right? But to me it will always be the story the river wrote. Thank you, autism.
I could go on, but I won’t hold you hostage to all the things I owe autism. These are just a few. One last thing I learned was that when you’ve had to receive a lot from others, you can’t wait to give. My husband lost his job the day after my son was diagnosed. In the face of a condition that required SO much money to treat, we had less money than we’d ever had. There were some really hard and really dark years in the beginning. So many sweet people in the autism community helped us, guided us, loved us. In some way, I want to give back. I am donating 25% of any royalties from the three books in my trilogy with Grand Central publishing to resourcing ASD (Autism Spectrum Disorder) families. Whether it’s a little, or whether it’s a lot, I will share.
And to celebrate Autism Awareness month, I’m sponsoring a giveaway. Click HERE to enter and possibly win!
There were several signs that Kennedy Ryan would be a writer, but making up stories with a mop as her long-haired heroine while the other kids played kick ball may have been the most telling. After graduating with her journalism degree from UNC-Chapel Hill (GO, HEELS!), she found various means of gainful employment having absolutely nothing to do with said degree, but knew she would circle back to writing, in some form or fashion. After years of working and writing for non-profit organizations, she finally returned to her first love – telling stories. Her debut novel, When You Are Mine, the first of The Bennett’s trilogy, releases through Grand Central’s Forever Yours imprint in June 17.
In an alternative universe and under her government name Tina Dula is wife to Sam, mom to Myles, and a friend to those living with autism through her foundation Myles-A-Part.