I want you to imagine with as much detail as possible plunging into an encounter with your deepest fears- the ones that instantly and efficiently sever the communication between your intellect and your reactions.  These are the things that cause you to panic, raise your voice in fear, flee, or propel you to act before you can think if your movements will actually be safe or beneficial to you under those circumstances.  And now, understand that I want you to stay in those exact conditions and act like a calm and typically behaving person for at least 5 minutes, possibly a great deal longer.

Very few of us can actually manage high levels of sustained calm when surprised by the things that panic us most.  What I feel like people fail to connect the dots on when it comes to our son and his behaviors in public is that for Tony, every time he goes into most public settings, we are asking him to do precisely that.  And then, he’s getting judged as deficient for doing exactly what the vast majority of us would do when thrust into confrontations with what we find personally terrifying. 

Your fears and my fears, they might be completely different.  You may not understand what freaks me out and vice versa, but I want you to understand that every time you’ve read a description of Tony’s challenges in public and what we are doing to help him adjust, you are reading the story of a boy every day bravely doing his best to confront his own fears and an array of unpleasant sensory input.

Mostly, this has been a period of great success and growth in our little man’s ability to improve his tolerance for public environments.  Emily has been such an asset and a blessing in helping to trouble shoot and advance his skills.  For example, we had one Vitamin Shoppe trip that was a disaster in attempted self-harming because he was so very angry about not being allowed to climb their stocking ladder.  I think it is the only thing he found even remotely appealing about the store.  So, she recommended we send her in before the next trip and ask them to move the ladder to the back, which they were incredibly supportive of doing, and that second stop was a highly successful visit.  

What I am going to spend the rest of this post doing is highlighting some techniques we are using in our ongoing efforts to help the community seem a little more comfortable to Tony.  There will be a lot of pictures with this post, and I’m not sure how they are going to come across in the e-mail to our subscribers…so if there are any difficulties with that,  feel free to visit our blog directly. All of the following pictures were taken by me, and are displayed in galleries on our website for family members who want to click on them for a larger view of the individual pictures.

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In the past, I have been the person working directly with Tony for everything but communication requests. We are now working on generalizing his ability to cooperate with others for taking directions and waiting in public places.

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This year, because Tony was having an emotional period while he was adjusting to his new medication and the loss of the Fabulous Miss Whitney in his every day life, we avoided all public places with larger amounts of people during the last three months of 2018. Doing this prevented us from doing the months of prep work for Zoolights that was required last year, so when Hannah decided she wanted to go still in January, we took one trip through during the day to see how he would handle it and then launched right into a Zoolights trip the very next week. He was more anxious this year, and he tried to flee when we were leaving because he was scared of all of the people still coming in, but he did an excellent job of communicating directions he wanted to walk, when he needed to use the restroom, and I think the true success of this boils down to the difference in the amount of prep needed. Last year, we couldn’t have gotten him through at all without those months of desensitization work.

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We’re working on helping him acclimate more to crowds by reintroducing mall work. We started with Tangers because Tony feels more comfortable with the outdoors layout. Ice Cream is a positive way to motivate longer tolerance of the environment.

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Tony is also more willing to stay in the environment longer if he gets to sit near a fountain or some plants. Tony’s attempts to eat rocks have gone down dramatically, however when he’s got new teeth coming in (currently he has four of those) he still wants to stick a whole bunch of things in his mouth that don’t belong there, so he has to be watched carefully with this strategy.

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These pictures highlight multiple tactics. Tony finds the smell of Bath & Body works so overwhelming, if you are planning on asking him to enter one you better have french fries- no other motivator will do. We are working with timers to help Tony wait longer in environments when he would like to leave, and we do some work to help him generalize different locations of the same chain of stores. He also really enjoys bottles of water, so I will purchase them as requested. And in a fine motor victory, yes, he can really get the lid off by himself once I crack the seal.

* Please note, the original post went out with the second picture in this series mislabeled as the second Ulta stop, which we stopped at right after the Bed, Bath & Beyond visit that is actually pictured with this series. Oops, my bad 🙂

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Tony really, really likes soft, squishier sitting surfaces. We work on extending visits by allowing him to sit on these as long as possible…but he almost always takes his shoes and socks off, so that’s something we’re still working on.

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We took Tony along on a trip to pick up some therapy scripts from his primary care doctor, and in the upcoming months we will introduce medical plazas to his therapy location rotation. We also will sometimes use spinning chairs and squeezes to help Tony either get calm (Staples) or stay that way (White Tanks Library). Also, on weeks where he’s had a lot of appointments or events that he finds stressful, we pick library branches or other locations he’s more comfortable with to balance out the demands on his nervous system.

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We make use of courtesy fruit stands in grocery stores that have them and use this as an opportunity for him to request things in more distracting environments. We also will prompt him to ask for the entire bag of whatever snack we have brought with us, if that is what he is wanting. Sometimes insisting on an adult retaining the bag turns into a battle for control that prevents achievement of the overall goal of having a minimally disruptive visit. With Tony, you can try to prove who has the most authority and end up smashing into a roadblock because he’s quite determined about his own ideas, or you can respect his preferences as an individual and get a whole lot farther. And, at Emily’s recommendation, we will increase the tempo of his metronome to assist with regulation when he’s feeling more upset by a particular location, as we did at Sam’s Club this past month.

And, to be perfectly honest, occasionally when his behavior isn’t displaying the highest levels of decorum, if nobody is being bothered and he’s happy in the environment…we’re just focusing on loving him and being thankful he’s getting more comfortable with a wider selection of places.