Shanan Winters is a freelance writer and novelist living in the Phoenix metropolitan area. She has avid interests in geek topics and fandoms, issues of parenting, Autism awareness, cooking, gardening and natural living. You can find Shanan at http://shananwinters.wordpress.com.
Today is April 2nd; better known as World Autism Awareness Day. It’s also the day my son was born. Nine years ago, I held a perfect little baby boy in my arms for the first time, but only after the nurses and respiratory therapists had brought him back from the brink of death. He was born blue, and in that 30 seconds that followed his birth, I thought for sure I’d lost him. He proved to be a fighter, and came through it.
As he aged, he was healthy and happy, but we noticed that he acted differently than his older siblings had. He had extremely compulsive tendencies, wouldn’t make solid eye contact, and had a tough time with certain gross motor skills. Shortly after his third birthday, we sat in a room with a child psychiatric specialist and received his initial diagnosis of high functioning Asperger’s Syndrome. During the appointment, my son was so uncomfortable that he wouldn’t sit still. He circled the room repetitively… across the floor, onto the couch, over the table, and back to the floor. Over, and over and over. I tried to hold him still. He flailed and scratched my cornea.
I realized after that day, I had a lot to learn about my own child.
At first, I felt like my world was rocked to its core. I’d been given a set of circumstances for which I was entirely and utterly unprepared. I did what I do when faced with something incredibly overwhelming and mystifying: I started reading. I had a reason for my son’s behavior patterns, but I didn’t know what to do with them. The only course of action was self-education. I read about Applied Behavior Analysis. I joined Autism Speaks. We participated in the Zoo Walk for Autism. We met other families, and talked to doctors and joined online groups.
The days that followed diagnosis led to a string of emotions that can only be compared to mourning. Looking back, that seems ridiculous, but it is what it is. We grieved for what we figured was the loss of raising a neurotypical child. We denied that the test results were accurate. We bargained with the Universe for another reality. In the end, we found acceptance: Our son is exactly who he is.
That was the point where I realized that my child is special. Not special needs, but awesomely, incredibly special.
I’m a writer. I look through the lens of my character’s eye and I see the world from his point of view. All of a sudden, here is a child who I have the privilege of raising who sees the world differently than anyone else I’d ever known. His viewpoint is unique. His reactions are so unlike my own that he stops me in my tracks. And as he’s grown, he’s shown such wisdom that I can’t believe it’s coming from the mouth of such a tiny being.
The world is tough for him sometimes. He routinely says that he doesn’t understand people, and he told me once that he just doesn’t get jokes. However, he still tries so hard to make them up. The other night at dinner, he asked, “Why did the man buy tickets to the baseball game?” His punchline was, “Because he wanted to go to the baseball game!” He is forever and always literal to the core.
As for people: He may not understand their motivations, but he certainly has a way with them. He will, in any given social situation, identify and isolate the person in the room who carries the most influence, strike up a conversation with them, and keep them rather enchanted. He once walked up to the general manager at our local grocery store (no idea how he knew the guy was the manager) and he said, “You need to take down the Christmas decorations. It’s not even Halloween yet!” The manager laughed, agreed, and then they went on to have a conversation about the Arizona Diamondbacks — because, of course, my son knew all the stats.
As he’s grown from a tiny kid to a “big boy,” he’s come to his own realizations about himself. His father was recently in a serious accident. When my son saw his dad in the hospital, he turned to me and said, “Mom, I don’t understand what I’m feeling.” We worked through the process of naming his emotions, and he was able to gather himself and continue with the visit.
Those examples point to the extreme privilege I have of raising this child of mine. We’ve brought him up to know that no matter what, his voice and feelings and wonderings about the world matter.
I’ve learned to live in my son’s world, rather than forcing him to live in mine. In doing so, I’m able to guide him to that halfway point, where he can see the world for what it needs from him, and operate to the advantage of both himself and his peers.
I often say that he’s going to grow up to be a CEO of a major corporation. He’s leaning hard toward professional hockey player. Whatever he becomes, I know it will be deliberate, and I know it will be on his own terms. I’ve joked over the years that raising and Aspie puts me at an advantage: He comes with a shelf full of user’s manuals. However, just like any child, he rarely follows the rules in those books.
As he passes through the mid-point in his childhood, I find that I’ve never stopped studying. Each year brings a new set of circumstances, challenges and triumphs. I wouldn’t change a thing. Even in our hardest, darkest moments, I wouldn’t wish for my son to be anyone other than exactly who he is. He is an incredible young man with a bright future ahead of him. When he gives love and attention, it is with an intensity that is overwhelming. When he is passionate about something, he invests himself fully.
Which brings me back to today, nine years since his birth and six years past his initial diagnosis. I’d like to do away with that term: diagnosis. My son is not afflicted with Asperger’s Syndrome. It’s not a disease. It’s simply the manner in which he approaches life. It’s a characteristic, like having blue eyes or brown skin or webbed toes.
My son is amazing. He’s bright, his memory is annoyingly accurate, and he surprises us daily. He is exasperating as often as he is endearing. Each day with him brings a light to my life. His light just happens to shine blue.
Happy Autism Awareness day, everyone.