Several months ago, Tony, the Fabulous Miss Whitney, and I had just strolled a few feet into our local Costco.  I was wearing an Autism shirt I had recently purchased from a vendor on Etsy. A woman we were passing looked up, read my shirt, and fired off the following: “Lucky. I can’t even get my son with Autism through a store, he has to stay home with a babysitter.”  I was taken aback by both the apparent expression of jealousy on her face and the hint of bitterness in her voice.

These interactions can happen in flashes of seconds, and even with my thoughts sprinting to the point of barely catching my mental breath, I don’t always say everything that would represent the best of what I would want to say in the moment.  I wanted to respond, “Lucky. Used to be I couldn’t even find a babysitter most of the time, and even now it’s not that easy and I certainly couldn’t do it every time I needed to go into a store.”  Just to be clear, that thought did not represent the best of me at all, but rather reflected some of my more human failings.

I snuffed those words out before they could fall off my lips and spark a fire, because as unsettling as I found her comments, I recognized in that moment that even though she clearly didn’t understand much of anything about our circumstances, I was equally unfamiliar with the details of hers.  I simply looked at her and said, “You know, every child is different and we work very hard.”  Which we do.

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In the past five years, we have experienced so many things in our public therapy work: vomiting, anxiety driven potty accidents, fleeing, flip outs, self-harming…you know, it’s a long and extensive list and living in those memories is like a stampede of paper-cuts. I always remain sensitive to Tony’s needs and the people around us as we work, I clean up anything that goes wrong, and remove him as quickly as possible from a location if he begins to cry or scream in earnest.  People who see things going well don’t realize the countless hours of painstakingly incremental work that have led to his current successes.

And even now, when we are experiencing the best outcomes we have ever achieved as we work in the community, we still have moments where his struggles quickly take center stage and engage the attention of everybody in our vicinity.   Two weeks ago, for example, Tony had a heavier week with meetings, a doctor’s appointment, a speech therapy evaluation, and more than one new person working with him.  When his schedule is that packed with elements he finds aversive, his flexibility in public is greatly diminished. 

He blew up like a volcano and tried to flee to the garden section (which is his favorite area of this location) on the second trip we took into our local Walmart that week.  I realized too late that the Doc Marten’s I wore provided insufficient traction support on their high gloss floor as I blocked his attempts to run past me while shrieking like a detonating siren.  After a couple attempts to get down on his knees and bang his head into the floor and his third attempt to flee, I picked him up, put him in the shopping cart, and pushed it around at a speed that quickly calms him down.  This episode probably lasted less than a minute, but everybody who could see us was watching like Netflix.

Or there was our trip to Cabela’s last Friday.  Typically, this store still thoroughly freaks our little man out and I was expecting we were going to be in and out in less than five minutes.  The last time we were there with him a few months ago, we had to skip around the first floor to keep him calm.  He still found the bottom floor overwhelming, but he asked to go upstairs, we walked around for about fifteen minutes, and when I noticed he was beginning to feel overstimulated by the environment, team Tony headed to the elevators. 

By the time we made it to the ground floor, he was worked up and started skipping quickly towards the exit- and I couldn’t get him to change directions towards anything else.  As soon as the exit was visible, he began to run like his life depended on it. I could catch enough heads whipping around in my peripheral vision through these brief seconds of his panicked flight to know that we had once again been stealing the show. We left at that point because I could tell from the whimpering and the pace of his breathing that if I insisted he go back further into the store, he would have had a massive meltdown. 

And sometimes right now, if he’s really not feeling walking the direction you’ve asked him to go, he’ll start hitting his head with the open palm of his hand. That behavioral response is like everything else- we are working on it- but this particular reaction of his is a guaranteed stare generator.

When I was young, I learned exactly how capable I was of doing what I felt was right or important to me even in the face of considerable ridicule or occasional disapproval.   To do what we have done with Tony, you need to hold tight to a vision of what the future of a child could be like if this type of therapy work isn’t done.

At the time I encountered the seemingly envious mama in Costco, I felt like this experience was a good reminder not to try and diminish the joy of another.  When we compare ourselves to others, we never have the entire picture…and such comparisons can ruthlessly plunder joy- both for ourselves and for others.  As parents of such special children, our jobs are hard enough.  Supporting doesn’t end with a hug for one another in our heartaches- it expands more fully when we rejoice with others in their moments of joy and never try to cheapen it by assuming such success was easily come by.