This is a post I wish to write with as much sensitivity as possible. In choosing to touch upon this topic in any manner, I have been basing my decisions on what I can glean from Tony’s public actions and decided that currently he wouldn’t be concerned about us having this conversation. What he would want you to know is what he’s been telling Jessi and I using his own voice at music therapy the past few sessions while receiving vestibular input on the swing: “Yeah, yeah. Goo’ boy. Goo’ boy, yeah.”
Tony would want you to keep in mind that he’s doing the very best he can, and that even when something definitely doesn’t strike others as being appropriate, he still wants to be thought of overall as a good person. And if ever a time comes in the future that he decides he’s concerned about this post being out there, I will take it down. Until then, I wish to create another one of those bridges of understanding within the community for what families like ours can be struggling with and give some possible feedback from our specific circumstances to other parents with potentially similar circumstances that may be helpful.
Finger painting has long been a staple of early American childhood activities. Like many kids with tactile defensiveness, Tony initially wouldn’t touch things that were gooey, slimy, goopy, sticky, or even moist. So, of course, we couldn’t get him to do this kind of painting. We did a lot of sensory integration work that dramatically improved his willingness to touch those textures, and on July 4, 2015, it colored our world in a less traditional manner.
I had been talking to Hannah in our dining area/kitchen, which is merged into a joint space with the living room. My eyes had been off of Tony for only about a minute and a half- which was just long enough for our little man to do a poo, shimmy his diaper down off his hips, smear handfuls down his legs and across the bottoms of his feet, run in one big loop around the coffee table, and plop himself down on the couch, where my eyes and ears were struggling to reconcile the scene and stench with his jubilant giggling.
My instinctive reaction unfortunately was to squeal “TONY!” I knew the moment his lips curled tightly with glee and his eyes illuminated his expression with what can only be described as a cross between the fairy Puck and the Grinch getting ready to stomp out Christmas that I had made a grave mistake. Fellow parents potentially setting out on a similar path, if I can make one statement of caution: do not react. This will be an investment in self-control that will pay dividends.
The moment I squealed, it was almost as if Tony was thinking “remember that public therapy stuff we’ve recently started doing? Paybacks are coming and I know exactly how!” I honestly couldn’t stop myself in that moment, because I realized exactly how long and awful it was going to be to clean all of that (four hours of epic cleaning to get it out of the rug and sofa upholstery), but looking back I surely wish I could have suppressed both my squeal and horrified expression. I wish you every success in mastering your reactions better than I did.
Now, this became difficult to navigate publicly, having as I do a kiddo who struggles with anxiety poos when he’s fearful in public. The first hint of how challenging this could be happened just a few short months later. The day had started out with a therapy session with Tony’s first NMT therapist, Julie. He had become really upset because the room he wanted for therapy wasn’t available during his session. The meltdown was fierce, but he had calmed down by the time we had driven most of the way home, so I decided to keep our routine of stopping at Costco to do a few minutes of tolerance work there.
This proved to be a poor judgment call. The number of cars in the lot scared him, and he had blown out that diaper before we slid to a stop within our parking space. Whenever this type of thing would happen, I made sure to clean him up in the back of our car because I didn’t want to leave him gooped up like that longer than necessary. On that day, his anger over being denied his favorite room at music therapy had significantly impacted his willingness to cooperate, and it was like he’d sprouted an extra eight hands as he grabbed and smeared brownish streaks on everything he could reach.
He began shrieking as I tried to clean, so I pulled him outside of the car so that bystanders could see he wasn’t being harmed in anyway. It was one of the most traumatic 15 minutes I have ever had in public by the time I got him, the car, and the parking lot surfaces successfully cleaned. Bless you Lysol. And, I used nearly an entire pack of wipes. I only remember swearing once, Hannah assures me it was more than that. And, I unfortunately yelled at our sweet girl for moving the bag of dirty wipes where he could grab it and practice some additional artistry. I apologized to her for it, but I still feel badly…I do not like to yell at anybody.
By the time the infamous Costco poop painting incident was contained, I quietly loaded everyone back up in our car and drove home. We never made it out of the parking lot that day, I was far too shell-shocked. This incident more than any other impressed upon me the urgency of potty training. He and I have done extensive amounts of work. Potty training took about a year, though a few years after we lost the diapers he still needs assistance with some things. We had an additional couple of years of work towards communication goals about bathroom needs and helping Tony understand we would go straight to a restroom when he was scared (reminding him to hold it in the whole time we’re en route) before we got to the point where most anxiety poos made it to the toilet.
Tony’s speech device has played a huge role in this. Just this past week we were out doing public therapy with J.N. at a local Fry’s, where a visually dominating Mylar balloon display recently sprouted up that he is terrified of. He ran past it, then grabbed his AAC device to let us know he needed the bathroom- and we made it just in time.
The home front was a bit trickier. Over time, his motivation seems to have shifted and I had noticed we were having a few too many middle of the night attempts at redecorating before I connected the dots: he got a bath each time because he naturally made sure to get sufficiently soiled himself. Tony has grown to love baths, and if he wanted extra baths it clearly seemed logical to him that this was the most likely way of getting messy in a mud-free house. Once I noticed this, I changed the way we did things and he and I have repeated conversations to help him remember.
Everything goes in the potty, and if he wakes up needing to go in the middle of the night he must use his device to tell me. If it doesn’t, we’re using wipes instead of the bath. If everything goes in the toilet, he can ask for an extra bath each day. He understands, and thankfully we have now had a few blissful months devoid of 230 a.m. painting and cleaning sessions. Figuring out what was positively motivating him to continue his creative redecorating efforts allowed me to offer him something constructive that could get us both a bit of what we wanted.
I cannot be lastingly distressed that his recent problem solving for getting extra baths was less desirable because I can only rejoice at the hope for him that it could mean having the ability to plan like this. Of course, I also must confess that these planning skills combined with his current lack of impulse control and risk assessment keep me very busy and incredibly high-strung. I feel like I’m always having to be one step ahead of innumerable disasters. And, he still won’t happily use traditional finger paints. But he is still very much our good boy, trying the best he can every day to deal with a world that feels very painful and scary to him.
