About a year ago, Whitney and I were working with Tony in one of our local Target stores shortly before she moved out of state. Another customer approached us and asked me some information about working with an Autistic child in public because she was hoping to encourage her partner to undertake similar outings (her partner had a kiddo on the spectrum from a previous relationship). She assumed I was a therapist, because after all I am pasty pale and Tony is not. I told her I was his proud mama, and we talked for as long as our little man would tolerate, which was only around two minutes.

This was a day where things were going pretty awesome. She may have noticed the flapping I had filtered out because it is so common place for our little man, or seen Tony’s AAC device, but most likely she had read my handmade “Autism Meltdown Containment Unit” shirt, paired that with what she was seeing, and envisioned perhaps a much easier path than we had walked in all reality to get us to that moment.

Those of you who have been reading with us since day one (or even since last week’s post), may be wondering why on earth we would have undertaken such a massive, painstakingly incremental, and occasionally eye-popping effort to help Tony function in public settings.

Let’s start with what my reasons aren’t. I’m definitely not interested in garnering a whole bunch of attention for anything that felt necessary to do. All that stuff is what it is and many times, it was me just improvising the best I could to get things done. A few years ago Tony and I accumulated a small group of spectators outside of a local Safeway…we were out of bananas and he could meltdown for an hour or more if we ran out of those, so I felt the trip was unavoidable to keep the remainder of the day successful. I tried to get him to walk inside or sit in the cart, and he was so panicked neither of those was working. So I lifted him up on to my shoulders (because, again, we needed bananas), where he ripped out one of my earrings in anger. So there I was doing a squat, picking up earring pieces, putting them back in while I held his legs firmly to avoid a fall- and he’s screaming all through that. He became a lot happier once I started walking (as I knew he would) but I had dropped jaws and stares thrown our way from fellow shoppers and our cashier…and it felt extremely uncomfortable to me.

I honestly don’t like that much attention, and as we’ve discussed previously, having veins popping in my arms and neck isn’t my preferred personal aesthetic. I simply needed his bananas so that we could have a more functional day for all of the hours that would follow. What I did then and every moment since is about what I had to do to get things done. That’s it. And I needed to use that technique for plenty of other things for a couple of years, including medical appointments and getting last minute presents for Hannah’s friends. I’m super thankful we’ve moved past that point, and I get to be a bit softer these days. Truthfully, it would no longer be safe. When we’re both barefoot, at age 7 Tony’s head is already even with my shoulders.

I definitely don’t think any of you should be impressed with who I am as a person either. Please understand that when I do what I do, some days it’s just flawed as can be. I recently had security at a public location insist I take my backpack that I use for carrying my wallet and all of Tony’s possible public therapy supplies back to the car. Tony wasn’t with us, I was doing a special outing with Hannah, but I usually don’t swap out my bags for those because of the time involved. Now, whatever else I am, I am not a thief. But having held a position in retail many years ago that oversaw loss prevention efforts, I do understand the types of concerns these bags can cause in public spaces.

However, that version of me didn’t show up for that particular conversation (it was the hot and cranky version that didn’t want to trek all the way back to our car in the heat or carry my wallet in hand the whole afternoon), and I sadly delivered up a fairly blunt criticism with a hefty side dish of snark. I’m dealing with a lot, but that doesn’t excuse witchiness, and sometimes I just run that way despite my general intentions to be otherwise- and each of you should recognize that I am just a person with a whole lot of dimensions you don’t always see when I’m writing for our blog.

I definitely am not interested in being pitied either. One of the best things about filling each of you in about what has been going on via this blog is that I don’t have to witness your reactions in person. I know everyone absolutely means well, but pity from others becomes an amplifier that makes already difficult things swell into behemoths of despair within my psyche. I need to bring as much positive energy as possible to what we’re doing, and increased self-pity impairs my ability to do that.

This has been a long journey where we started out just walking into places and walking out. I have cleaned up vomit, urine, and feces off of myself and other public spaces. I have carried him screaming out of stores, on my shoulders or in my arms. I have helped him work through bouts of self-harming in public, through extended periods of lifting him up from repeated falls to the floor because of sensory overload. We have done all of this and a great deal more. But why?

Our “whys” could start with an obvious one. In the beginning, most people weren’t comfortable babysitting our son and my husband was working full time while completing graduate school. When all of this started, curb-side order pickups at grocery stores wasn’t a thing. While all of this may be true, really the obvious reasons live only on the surface of the more important ones.

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As Tony’s mom, and the person who assists with maintaining safety for everybody across all therapy programs, I recognize something crucial about Tony. He’s much smarter than most people realize, and he’s capable of doing more than sitting in a room medicated and watching TV. Because of the severity of his Autism, he will not generalize skills learned at home to the community without exposure and practice at these public venues, and the severity of his sensory differences from his SPD makes this a long and arduous process. His growth rate is accelerated from Sotos, and we are in a race against time to help him gain comfort and skills before he gets big enough to flatten someone if he wants to leave a place. Habits he forms are the routines he likes to hold to. What we have been working at is helping him build functional and safe routines for common public spaces.

And we have been gradually succeeding. We’ve had to pull back on some things this past year because of the turbulence of his therapy team staffing and schedule, so the degree of improvements aren’t everything I hoped for. Next week we’re going to be reviewing some of Tony’s current progress, our strategies, and future goals. But we do thankfully have huge improvements in flexibility, reductions of self-harming, and the amount of time he will comfortably tolerate certain public environments over this time last year. And we have moments where he’s happy and enjoying himself.

He would not be having any of these positive experiences without everything that came before, and that of necessity involves moments that could be personally embarrassing or uncomfortable- and briefly disruptive to those standing around us. I make every effort to be respectful, but I figure as long as our disruption is of equal or lesser duration to other kids throwing a tantrum, we have just as much right to be in those public spaces. What we have been doing improves the long-term quality of life for Tony, our family, and for those who will assist him when we are gone. Failing to make these efforts would forever close certain doors for him, and that is “why.”