For many months now we have been leaning into the blustery fury of one regulation storm after another for Tony. A year- an entire year- where we barely had time to gasp furtive lungfuls of calm before the next significant event plunged us into a wave of behavioral turmoil. Many points I had to fight off my own cruel-leaning internal goblins shooting rusty cannons of fear and doubts across the prow of my plans as we attempted to maintain a robust and essential public therapy program in the face of a very public self-harming resurgence. And the whole time, our sweet little man is continuing to add inches and pounds that only complement and enforce his ability to achieve his personal desires in any setting.

My emotions have been reduced to a wasteland of exhaustion as we have slid into a port with virtually extinguished public self-harming and increased directional flexibility. We didn’t achieve everything I was hoping for this past year with public therapy, but in some of the stores our son is most comfortable with, we’re looking normal enough I don’t feel the need to wear one of my therapy shirts anymore.

All of this had taken a great deal of give and take. As the person responsible for picking all public therapy targets and goals, I have had to carefully consider when to pull back, when to push forward, and when to just hold our ground. And, while Emily was recovering from her surgery, there was a space of time where I was needing to do this work mostly by myself. Because of Tony’s size, what we are trying to teach him is definitely more effective with a second person, so that was a period of limping along where all we could do was keep our public therapy ship afloat.

As I was culling through all of the pictures and techniques we’ve been using since our last major public therapy update, I realized it would be necessary to split these materials betwixt two posts. This week we’re going to discuss what we are doing in public environments Tony already has decent tolerance for, and next week I’ll be reviewing what we have been doing for environments that he has pretty aversive reactions to.

Pulling Back

This has been a year where one of the best strategies we could use was pulling back. I had hoped to increase his ability to take direction from others in these settings, but with Emily’s foot surgery, that wasn’t an option for a few months. So our smartest move for that period was to continue with me taking the lead on all elements of safety and delivering instructions to him for these trips. As Emily has been given medical clearance for increased activity over the summer, and J.N. has started working with us on our outings a couple times a month, we’ve reintroduced having others take charge in giving direction and walking next to him.

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When therapists left our team that Tony loved, his more tempestuous manifestations could contraindicate public work, but what I have found is that by carefully pulling back from more difficult sites and choosing instead to visit his preferred locations, we can still have a successful, mostly behavior-free trip that allows us to give him opportunities to continue practicing needed skills.

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Doing this allowed us to focus on continuing work towards reducing self-harming with replacement behaviors. We have been focused on prompting physical substitutes that are safer for him when showing anger (like stomping or clapping his hands) and on using his speech device to communicate his wants or feelings. One of the challenges we have been having there is that while he’s by-and-large stopped trying to whack his own noggin on these outings, he will try and smack shelves, boxes, or other things a store manager would rather have left alone.

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One of the reasons I got the contractor’s belt was to allow for me to have both hands free to intercept him before he can make contact with anything else, and provide a gentle hand-over-hand prompt for clapping his hands when he’s feeling angry enough to whack something. I have also added a penalty wait of 10 seconds for every time he tries to bang his hands on something he shouldn’t. I know the time period seems brief, but we just need it to be long enough to make the point without it being so long he decides to give up trying.

Pushing Forward

Sometimes pushing forward in a location requires trouble-shooting ways to help Tony move past a behavioral script he’s picked for a certain location. Ulta, for example, was never a preferred location for our son, but we had started having some really encouraging successes in duration and behavior before Whitney left. The emotional upheaval was so intense during the months that followed, he’d gotten into a pattern of walking into the store, immediately requesting to leave on his AAC device, and then we’d try to stall him for about thirty seconds or so while we walked slowly out.

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One minor tweak, and we are now having successful trips of about a thirty minute duration. One of us will run ahead of whoever is walking with Tony to open the door, and the person holding our little man’s hand (usually me for this location) will run to the restroom at the back of the store. Once he’s there, he usually asks to go potty, and then he feels more comfortable walking through the store aisles. Waits are still a bit of a challenge, and I usually walk in front of him (but facing him) so that I can provide pacing guidance and he can’t rush forward and bump into shelves packed full of small breakables.

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Additional Trouble Shooting

There are times when he gets pretty upset. Just yesterday while we were at location number three (a Target farther from our home he’s less familiar with), he had a melt down that ultimately required putting him in the shopping cart. He had eaten his way through all of the snacks he wanted, and began requesting items that weren’t with us. By about the fifth selection that had to be denied, he started sobbing at the top of his lungs. What I was trilled about was that a few months ago this would have led to self-harming. There was none of that for this protest, and he did walk to the checkouts with us, but the wait was long enough he started trying to push past the customers in front of us, and we needed to use the cart to keep everyone safe.

I also use this strategy for direction changes he’s less fond of to minimize behavioral disruptions to those around us. Once he’s in the cart, we will ask him to walk, and honor any refusal given on his AAC device. We are needing this technique less these days, but sometimes it is still the best option we’ve got. Pictured is this technique at use on a trip to a local Walmart this past June.

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The Importance of Communication

Even when we go places Tony is excited about, sometimes things can happen where he wants to leave. His instinctive desire is just to push or rush towards the door in these cases, but what we have been working on is helping him request to leave first and then promptly following through so that he feels like force is unnecessary. I was so proud of him for doing this a couple of months ago when a larger group of girls came into an orange leaf we had stopped at. The noise and size of the group scared him, but he asked to go and waited while everyone got their bags. Since he himself wasn’t finished eating, Tony opted to plunk down on a quieter bench down the street. Yes, it would have been great to finish inside the air-conditioned dining area, but it was better for our long-term goals to leave without crying, self-harming, or pushing. Over the next few months we will gradually increase the amount of time we ask him to wait before leaving in these situations.

Community Safety

Community Safety is an area where we have seen strong improvements in emotional regulation with directional flexibility. During the fiercest part of the his regulation storm this past winter, I needed to purchase a wagon with a 200 pound weight capacity to bring on these outings so that we had a preferred option to ask him to sit in when he was vehemently opposed to a direction change. This became an important part of my strategy for reducing street-side meltdowns and more dangerous attempts at eloping towards traffic, but we have thankfully not needed to use this since the Spring. What we are currently working on his having our little man walk and take direction from Emily, talking through any direction changes a good block in advance so he has time to prepare his mind for the transition, and looking for cars at street or alley crossings.

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A Few Additional Concerns

We have an assortment of less disruptive things we have been working on. Laying down on the floor is one of Tony’s favorite things to do when an indicated direction is less desirable. Taking sips from drinking fountains often turns into playing, so I give him a countdown for walking away. Self-check out lanes remain a bit of an issue because he likes to sit on the weight-sensitive portion where scanned items only are meant to go. Currently we’re having to block him from reaching it by placing the cart between him and the bagging zone.

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We also have to be careful about routines for places he’s fond of. He will solidify anything after just one occurrence. Emily has only gone with us to the community pool twice, where her role has been to chase him down outside of the pool if he gets out and tries to run somewhere he shouldn’t (I keep him safe in the water). He loves visits there, but after the first visit he’s already decided where she’s supposed to be placed based on her location for trip number one, and was angrily storming out of the pool anytime she moved from that spot during trip number two. So we have to be careful to make sure our own routines at every location are varied enough to prevent more rigid patterns and expectations from forming.

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We are also continuing to work on waiting in a variety of settings, though he’s absolutely more willing to wait at places with chairs or benches.

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Our voyage ahead is long, but we’ve been slaying fear goblins left and right the past few months. The relief and joy over our progress away from self-harming in particular has been putting fresh wind in everyone’s sails over here. I want to thank each of you for hanging in there and reading through part one of our public therapy log updates. I promise next weeks will be a little bit shorter…