The woman on the playground stared at Declan with her mouth hanging open for at least ten minutes. He walked to the top of the ramp and spun the wheel. He walked to bottom of the ramp and banged the xylophone. He repeated this behavior about nineteen times. With each trip the space between the woman’s eyebrows shrank under the strain of trying to understand something that was none of her business.
I knew she was either going to ask me something or I was going to throw her up against the fence and tell her to learn how to stare more casually. My response to the blank stares we encounter is to stare right back with same vacant expression. I understand that people are curious about my son so I stare at them because I am curious about why they think it’s any of their concern. How does the fact that my son can spend an hour spinning a Tupperware container concern them at all? What affect does it have on their world? What is odd to them is commonplace for me. It’s part of my world and he generally does very little to cross anyone’s personal space. I believe that if you’re going to stare at least plaster on a smile on your face like the object of your attention is the cutest person you have ever seen. Go ahead and wonder what the hell is wrong with my kid, just wipe that stupid look off your face.
Before Declan was born I was blissfully unaware of what life is like for people who have children who are not considered “normal” “typical” or “healthy.” There is no way to prepare anyone for dealing with people who are “annoying”.
With the woman at the park I had been afforded more time than I could ever remember to prepare myself for anything she might say. I raced through various scenarios where she asked an annoying question and I swatted her down with a scathing retort. Then, a sudden calm washed over me. I still don’t know why or where this quiet reflection came from but there it was. I wondered what it would be like to give this woman a chance to inquire about my son and tell her very casually and frankly about what his disorder is without the slightest hint of hostility. It would be new territory for me.
Actually, I was hoping she would stare and move on like most people do but her curiosity shoved her in my direction.
“What’s wrong with your son?”
My soul flinched as though this little woman had thrown a verbal punch at my heart. Her words hung in the air and a wave of rage raced up my spine setting off a siren in my ears. No one ever blurts it out like that. What’s wrong with him? Of course that must be the first thought people have when they stare at Declan. My mind started racing in different directions in search of a response. I flashed through snarky retorts. “What’s wrong with you?” or “that’s not my son, I found him at the grocery store” or “oh he’s just contemplating the existence of man like most four year olds do” or “He was just wondering how long that short woman with stringy hair was going to stare at him before she walks over and bothers his mom with a dim witted question.”
What’s wrong with my son is people asking me what’s wrong with my son. He has a disability and I know that people outside of my universe see that as wrong, but to us he’s a sweet little boy who loves Boom Boom Pow by the Black Eyed Peas and laughs at his brother when he jumps up and down on his bed.
I don’t know how long it took me to respond. I was busy flipping through the emotions I was feeling in rapid succession. Anger, disappointment, rage, annoyed. I took a deep breath and suddenly flashed on the possibility that this woman might be genuinely curious and not outrageously rude. She had a heavy accent so this could be a moment to cross cultural barriers. Maybe she had a child with a disability and she wanted advice. Maybe she knew people that could help me. Maybe something good could come from this encounter. Maybe.
“He has Autism.”
“What is Autism?”
CRAP. This was worse than I could have imagined. Still, I thought I could manage a calm, articulate response.
“Autism is a brain disorder that makes it hard to communicate and connect with people. It’s like a filter that changes the way he takes in information from the world around him.”
“What does that mean?”
What the hell? This woman wanted to know what was wrong with my son and she didn’t even have a grasp of the English language.
Here’s the real answer. His brain did not develop the way most brains do. A little piece is missing. A hiccup in the development. In the first trimester there was a glitch. It’s not the kind of thing we could have known before he was born. An ultrasound is pretty accurate when it comes to telling you whether you are having a boy or girl, but it can’t tell you that the little fibers that carry information from the left side of the brain to the right are missing. Hypoplasia of the Corpus Callosum is a mouthful of words that I wish I never had to learn. In essence, we have an anatomical location for the cause of Autism. Unlike most families dealing with Autism, doctors can look at a Cat Scan and see the source of Declan’s disability. Like most families with Autism we don’t know why. We only know for a fact that he is a sweet little boys who charms everyone who looks at him with an open heart.
I wasn’t about to share this load of detailed and dramatic information with little Miss Nosy. She would most likely not understand any of it. The idea of explaining life support, brain seizures, missing brain matter was daunting and I quickly realized inconsequential. If she couldn’t even meet me halfway with a working understanding of English we had nothing to discuss.
“He was born that way. It happens sometimes. He’s fine.”
That was going to have to be good enough for her and for that matter, me too.
I really felt as though “he’s fine” should cover any ground and most people would pick up on the social cue indicating the end of our conversation but she had another question.
“Does he understand anything you say?”
Seriously? All I could think, all I wanted to say in that moment was “do you understand anything I say?” but I did not. “He’s fine,” I repeated and walked away from her. That’s a conversation ender in any language. Besides, I running up and down playground ramps with Declan is way better than answering stupid questions. There’s nothing wrong with that.