Friday, September 2, 2022

What You Didn't See

 "Why fit in when you were born to stand out?" Dr. Suess 

To the woman who turned and stared at my son at the zoo,

  I know, I know. Open letters on the internet are so overdone. Nevertheless, I couldn't let this one go. You are just one of many, but you are the most recent. We were near the zoo exit when you witnessed my eight-year-old son have a meltdown. 

Your back was turned when it started. I guess you were waiting for your food as we were near the stands. You spun around when you heard the screaming. Sure, that's a reasonable, knee-jerk reaction. When you see the source of the screaming is a struggling child, when you see a mother struggling with her child, you could politely look away and mind your own business. Your other option is to offer a sympathetic smile and/or encouraging word. Those are the only two acceptable options I can think of.

You chose neither. You stared. No, I'm sorry, that's not accurate. You glared - a full-on, mouth opened, eyes narrowed, intense, shaming glare. You gaped at my son like he was one of the wild animals on display. Your glare was meant for me, too. Your judgement was written all over your face.

I could see the scene from your perspective - I know what you saw. You saw a mother who couldn't control her child. You saw a bratty big kid throwing a fit over ice cream. You saw a kid who was "too old to be acting like that." You saw a child who needed a firm hand and a harsh warning rather than help coping and gentle understanding.

You stared hard but you stared blindly. You saw wrong.

I know what you didn't see.

You didn't see the meticulous preparation that went into that seemingly simple zoo trip - and I don't mean just packing a backpack. With a neurodiverse child you can't just pack up and go. You need to show visuals and clearly outline expectations. You have to be hypervigilant in case of elopement or impulsivity. You have to have a backup plan and an escape plan in case it all gets to be too much. 

You'll silently but joyously celebrate every second of success, because you remember the days before diagnosis and in home therapy when you couldn't safely leave the house with your child. 

Yet, those things are not the biggest obstacle when it comes to outings with my child. The biggest difficulty we face as a special needs family is people like you.

I know what you didn't see.

You didn't see my son's autism or his ADHD because these are invisible disabilities, which left me to wonder - would you stare at a child in a wheelchair? Maybe you are the type of person who would do that, but I'll give you the benefit of the doubt and assume you're not. I truly hope you're not. The point is if you wouldn't stare at a child (or adult, for that matter) with a visible disability, you shouldn't stare at a child with an invisible disability. How would you know? How about this? Don't stare. Period. Unless you're looking at the animals at the zoo, but when we're talking about people going about their day, I really can't fathom a situation in which it's appropriate to stare. If your life is so mundane that you feel an insatiable need to stare at people, do yourself and the rest of us a favor and stay home watching reality television. 

You didn't see my son's autism, but more importantly, you didn't see him. You didn't see his excitement for the zoo or his voracious love of animals. You didn't see him defeat his anxiety to leave the house. You didn't see him carefully studying the map with his beautiful brain and successfully guiding us where we wanted to go. You didn't see him saying "hi" to the birds and imitating their unique sounds. You didn't see his determination to find the wolves or his bravery crossing the high bridge even though he's afraid of heights. You didn't see how he made sure to patiently navigate me to the elephants even though he was so anxious to see the wolves, because he knows how much I like the elephant exhibit. You didn't see him stoically navigate his disappointment when we finally reached the wolves and they weren't out. You didn't see him transition to the next animal. You didn't see him share the map with his brother. You didn't hear him laugh at the antics of the monkeys. You didn't see him handle the crowds, managing his anxiety and the sensory stimuli. 

Where there was a day full of successes, you, in your ignorance, saw only failure. You saw a failing parent and a failing child at the end of a long, hot, successful day.

You didn't see him grapple with another (small, in our eyes) disappointment when the stand was out of his favorite ice cream. You didn't hear what he heard when I told him we'd check other stands we passed to see if they had it. He expected something that didn't happen, and for a person with autism this can be the lynchpin. Perhaps to you or me not seeing wolves or the stand not having a particular ice cream bar is not a big deal. Allow me to open your eyes a bit. An individual with autism often relies on knowing what to expect and what's coming next. For my son, even a small change in plans or shift in expectations can dysregulate him. Therapy helps and he works hard at it, but he still struggles. You saw a tantrum when what you were really watching was a meltdown.

You didn't see my son's autism, but more importantly, you didn't see him. Honestly, I feel sorry for you. Your world must be very small. You stare but you are blind - blind to neurodiversity and difference. You're missing out on getting to know the outliers who have struggles, victories, and entire lives outside the periphery of your narrow vision. 

Let's replace assumptions with tolerance. Let's replace ignorance with knowledge. Let's replace judgement with compassion. Let's open our eyes and look beyond ourselves.

I feel sorry for you.

There's so much you didn't see.