The cashier at Bashas’ looked at me as she pulled Tony’s bag of suckers across the scanner and said, “I haven’t seen you guys in a while.” Her eyes crinkled around the corners, so I could see that she was smiling even though her mask covered much of her face. A whole year I thought, which felt like more than a while.
“We’ve been working on some things.” And we have been, a whole lot of things.
I’m not terribly surprised she remembers us. Over the past several years, we’ve done plenty of things that would make us memorable in just about every location we’ve ever tried to work with Tony in. Him puking or having an anxiety pee that flooded his newly changed diaper in the earlier years, causing me to scrub down the cart, my kiddo, and the floor. Me carrying him on my shoulders when I really needed to get something from a store that I couldn’t get on-line because he was scared and refused to go in. (The day Catzilla died, he shrieked and ripped out a small chunk of my hair because he was so upset I used this tactic to get him into a store, and then that really got us noticed because I squealed a bit in pain). Tony self-harming or briefly screaming if something happened to upset him. Me chasing him all over the place when he tried to flee because he was scared or wanted to play chase. Him trying to lick the cart handles, or touching every single thing on the shelves and counters. Him wanting to bang on empty shelves.
Many of the behaviors he has struggled with were things people could tolerate with some level of equanimity outside of a pandemic (even if they did think we looked a bit crazy in the doing). I did everything to limit them and we had certainly been working with Tony to completely eliminate them. And many challenges had been entirely eliminated before last March, which was when our local community started seeing some businesses and schools go into lockdown. He hasn’t puked someplace public in a few years and though we often have to rush him to the restroom if he’s feeling anxious, he hasn’t had a public potty related accident since he traded in diapers for underwear.
But in a pandemic of this nature, I knew that not only would there be safety risks for our family from the remaining behaviors I was unable to accept taking, but that these behaviors would become upsetting to other members in our community because they would now perceive in them a possible risk to their own health. Aside from the obvious need to help him tolerate wearing a mask long enough to do something safely around others, we would need him to more completely control his urges to lick and touch everything.
The potential ramifications of having to completely kill Tony’s public therapy programs were a source of deep concern for me. I knew that he wasn’t going to stop growing during the time we were trying to help him resolve these behaviors outside of a public setting (though thankfully, his growth has slowed down), which could mean we would entirely loose the opportunity to help him move past these behaviors if he got too big to safely work with. And I knew it was possible that some of the skills he practiced and mastered in settings such as our home and the neighborhood streets might not generalize to a store environment.
I acknowledged the concerns and fears within myself, because I believe denying ones feelings the respect they deserve is always counterproductive and can often be harmful. And then, I started to plan what we could do to bring about an eventual resurrection of these programs (seeking as I did the input of Emily and Casandra, who have both worked with him in these environments and have first hand knowledge of what it is actually like to work directly with our son in this capacity).
The first thing I started working on was mask tolerance. Our son has a history of pretty extreme tactile defensiveness. This results from his sensory differences, as the nerves in his skin are over-responsive and produce pain signals for things that wouldn’t bother a typically functioning nervous system. What we began with was just putting the mask on and letting him take it off. Once that was well-tolerated, I began advancing by 2 and 3 second intervals until we got to a minute of tolerance, at which point I began advancing my 5 second intervals. The mask that he has ultimately been able to tolerate for the longest periods of time so far is made by Findyourmask on Etsy. They are super soft, and my son does best with soft things.
I began talking to Tony about the germs causing this pandemic, how sick many people were becoming from them, and that many people were dying. We talked about how he wouldn’t want to make his therapy friends that come in to work with him sick, and we focused on reminding him frequently every time we walked in the community. If he touched something, I immediately applied hand sanitizer and reminded him. I would randomly compliment him and give him skittles when he kept his hands off of things like lampposts and mailboxes. Tony often isn’t willing to control or change his behavior just because he’s been told no or that people won’t like it, but he will often try harder if he knows what he does could hurt someone he has a bond with.
We began doing extra community safety runs that involved getting out of the car, walking short distances practicing with the mask, and getting back in. These were described in a previous post, and were in part designed to help transition him into the expectation of needing to wear the mask in public.
When we first began trying to resurrect our public therapy programs, we started with just going in and out, because I wasn’t sure how much regression we would have in his ability to tolerate the heightened sensory components of public environments. I also knew that some of the changes brought about by the pandemic would startle him at first, and he would need time to adjust. And I always show him a picture of where we are going so he can prepare himself mentally.
We advanced this to planning a brief run into our local gas station to buy him a bottle of water. Since that was so well-tolerated, I decided we were going to aim for a brief trip into Bashas to get Tony some of his favorite suckers. We have worked extensively in that location, so I knew our little man would be more comfortable starting out there, and that the suckers were always near the cashiers so we could be in and out pretty quickly in case it wasn’t going well.
He did phenomenal. I rarely have to prompt him to keep his mask on for any of these trips (though initially I used a timer to help him remember how long to keep the mask on, this has been faded out), and he’s trying much harder not to touch things (though I do still have to bust out the hand sanitizer sometimes because he looses the battle with his impulse control on that one).
We have now expanded to other locations. We don’t always buy something, because I am trying to limit us to fifteen minutes or so in each store. His mask is more comfortable for him, but doesn’t provide the same level of protection an N95 would, so we are focusing mostly on walking around, not touching things, and keeping the mask on. We have begun the tolerance work for a mask with better filtration, and will see if we can get him to wear it for any length of time during our upcoming public therapy outings. I feel like this is critically important, especially since Governor Ducey’s new executive order in effect strikes down other local mask orders. The variants are here, the vaccines use isn’t widespread enough, and vaccines still aren’t safety rated for a kiddo his age. Protecting him remains a top priority, so our next goal is N95 tolerance before we bump up time or further increase our public activities. At this point, I’m sure he’ll be able to get there.
