Originally, I had planned to discuss the sleep-related challenges Tony had during his early years in this week’s post.  But honestly, the last two posts- by nature of the circumstances laid bare- starkly avoided most anything approaching cheer and even I need a break from that. Often what we have here is not simply a single difficulty, but a nesting doll of crises that open upon themselves one after another without ever seeming to vanish completely to the smallest figure inside, and I felt like these particular events from the past could be served up anytime.

So, I’m going to let that one simmer a while longer and focus instead on comparing where we are at now to where we were a year ago, when this very week in 2018 I was just feeling thankful to have survived it.

For starters, there’s a lot more of Tony to love.  He’s a good 23 pounds heavier than he was a year ago.  This leaves me super thankful that there have been substantial improvements in some of the behaviors he engages in publicly when he wants something or is scared.

Nowhere was this more apparent than last Friday’s community safety walk. We began with a direction I picked, and then Tony asked for several direction switches on his own. Our current strategy is that he gets to pick some directions, I get to pick some when we are out walking in the neighborhood. For all of Tony’s skill deficits, he has a great spatial memory…while an undeniable asset, this will give you the sweats when your kiddo also has minimal risk assessment or impulse control.  And trust me my friends, no deodorant in the land is fully up to that job.

On this occasion, our little man decided he wanted to go to a park he hasn’t been to in at least 6 months (we are blessed to live in a community with an abundance of parks), and that is where his direction changes landed us.  Last year he was only barely beginning to be willing to go through plastic tunnels at playgrounds.  This past week that was all he wanted to spend his time doing. 

And he was having so much fun, Tony didn’t want to leave.  Once I persuaded him to get his shoes on and move onward, he asked to walk south of the park- and while passing the park this second time he tried to rush towards it.  I spent about five minutes blocking him from pushing his way there.  Last year, there would have been a lot more anger, a lot more screaming, a lot more pushing, a lot more attempted self-harming, a lot more trying to run into the street, and we would have been there for a great deal longer. 

I showed him my “no” picture, but he wasn’t ready to accept that as an answer. I did have to carry him, but only about 6 feet, before he was willing to cooperate with walking past the park.  This type of situation a year ago would have lasted much longer before he calmed down enough for me to lift him away from the area safely, and I would have had to carry him at least a block, often farther. We continued our walk after that, and he was enjoying being out in the community enough that we didn’t return home for about an hour and a half.  Of course, we did have to stop at pretty much every sign pole, streetlight post, and fire hydrant along the way (Tony loves to touch these).

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I have been mostly doing public therapy in the stores myself the past few weeks, as Emily’s foot is still recovering from surgery.  The sweet-natured Ms. C, who has recently started doing ABA with Tony a few days a week during the evening, has come with us on a couple of trips.  However, the trip I took with Tony to Costco over the weekend really highlights both the improvements and ongoing challenges in these settings.

First, Costco was just about as over-run as I have ever experienced it.  The number of people we encountered there was overwhelming, but by and large Tony handled it like a champ. The main behavior that posed a problem was his desire to push the cart out of aisles I needed to go in.  I ended up leaving the cart at the entrance to the aisles and walk with him to the desired item and bring it back to the cart, as he was willing to do that. He even handled the wait to check out with extraordinary patience, and didn’t need to watch a movie to stay calm.  We don’t always see that much acceptance for a longer wait, but increasing amounts of this improved tolerance is showing up.

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Sometimes though, we can still be eye-popping.  We went into a local Walmart Neighborhood Market this past Monday, and he was so fixated on controlling the cart so he could get us to leave early that I asked Hannah to push it.  This made him so angry he kept smacking his head with his open palm, and occasionally crying out in anger.  He tried to yank control of the cart away several times, and tried to flee towards the door three times. Every time anyone stopped to gawk at us Hannah would give them her biggest smile and say “hi!” in, as she puts it, her most adorable voice ever. 

Since our little man wasn’t harming anybody else, I didn’t want to leave before I had our stuff because I knew doing so would reinforce the idea that he could do this every time and get exactly what he wanted.  The gentleman behind us in the checkouts felt so bad he offered to help me unload our cart.  I declined, because I told him I didn’t want to get sloppy (as I was keeping Tony from fleeing with a leg up blocking his escape route). But even my cheeks are still pinking up a bit as I remember how colorful we looked during this outing.  Fortunately, most trips aren’t that “interesting” these days.

For both of the community safety and public therapy trips, what I have observed is that Tony increasingly would rather have what he wants than anything else you can offer him. When I was in elementary school, I fell in love with the movie Labyrinth the very first time I saw it at the theater. There is a great and oft quoted line near the end, where Sarah tells the Goblin King “You have no power over me.”

Tony understands this sentiment and feels the power his increasing size and strength can give him, so I personally believe that success for working towards the top goal of accomplishing functional activities in these environments entails compromises to what I might want to do and how I might want to do it.  Our son is an individual with his own likes, preferences, and sensory perceptions that, because of their intensity, decrease the likelihood that his behaviors can easily be “bent” to conform with the needs of a group.  I feel like I could get something done in public, or I can insist on having everything my way and get nothing done. Our sweet son only cares about what he’s being offered until he wants something else more…and if he does want something, nothing else will have as much power over him.  

So right now, we definitely may do more than just survive…but I do bend a bit with our little man. Thankfully, we’re still moving forward and getting things done.