“No Pressure”

Tony cuddling into me while I was trying to take a picture of us. All photos by Ariana

Andy and I watched Encanto for the first time this past Sunday, broken into sessions wrapped around the chunk of hours I needed to work with a new habilitation provider. As I listened to Luisa sing “Surface Pressure,” I felt how aptly and concisely it seemed to capture the way I feel so much of the time lately. “I don’t ask how hard the work is…I take what I’m handed…under the surface I feel berserk as a tightrope…pressure like a drip, drip, drip…tip, tip, tip…grip, grip, grip…tick, tick, tick…watch as she buckles and bends but never breaks…never wonder if the same pressure would’ve pulled you under…no cracks, no breaks, no mistakes, no pressure!”

So many obstacles that need a work around in my world cannot be so condensed in real life, though perhaps the summation thereof could be. Not always my strong point, that. But, perhaps if I practice…

Much of our therapy work is focused on helping him to habituate safe behaviors when confronted with things he doesn’t like.

There’s not much point in public speculation about why the current administration at the school across the street from us (Tony’s home school) doesn’t want him using their front public office bathroom anymore. The only thing I can say is that it wasn’t related to behaviors of his in the lobby. Because before he was turned away, the fact that we were often the only two people in there wearing masks was one of the more conspicuous things about us. Of course, he did flap sometimes, and he does use AAC speech technology, which would be also be noticeable, but he had his first meltdown ever in there when we were turned away a few weeks ago.

He’s been using that bathroom a few times a month for the past 6 years. He’s known about the existence of that bathroom since his sister was a student there, and he prefers it to the bathroom at the public pool nearby (he’s scared of how loud the hand dryers are). So, this created some extra therapeutic and community pressures, the first being how to explain this in a way that would keep Tony from escalating his behaviors every time we passed the school.

He’s a big guy! Currently taller than our friend Miss Emily, and on his way to passing my height also…

There are three possible explanations I could have given him, and I chose the one I felt I had the best chance of him believing but would cause the least amount of anger in him. I believe the truth as you understand it is always best to be used with a kiddo on the spectrum, but sometimes for Tony it’s more useful to only give him the parts of the truth he can calmly process. Given that we are two years into this pandemic, we were almost always the only ones in there wearing masks, we’re just now getting turned away, there are no restriction signs, plexi partitions, or other signs of pandemic related infection control measures…I chose to stick with emphasizing that it was because he isn’t a student there. I was counting on him not understanding that the UPS driver who’s sometimes used that bathroom before us couldn’t possibly be a student there either. A parent with a kiddo who could have latched onto that and understood the significance would have needed to use explanation number three in my opinion.

Tony looking back at the school office while we talk about the new restrictions. He understands more than most people realize, and he definitely has strong feelings about all of this.

I made sure for the next week we walked by the school after hours of operation, reminding him multiple times each walk that we are not able to go into the office anymore. We talk bout the why, and that the current administration absolutely has the right to say who can and can’t use their bathroom, just like he can say who he will and won’t share his popcorn with. This kind of explanation is most effective when he’s calm. If he’s emotional about a “no” he wasn’t expecting, reason lacks efficacy. I gave him limits for where he can go, and explained to him what behaviors are off-limits for when we pass that school office (any pushing or screaming). After a week, when he was calmly following my directions, we resumed passing the school during the day.

He likes standing at the gate next to the office and looking in at the kids, which we will allow as long as he is behaving calmly.

I also paired this with a renewed effort to help him tolerate the pool bathrooms. I talked to him about how I understood he was afraid of the noise, and that I would let him hold my hands while we were in that bathroom so that he could be sure I’d go nowhere near the hand dryer and accidentally trigger it. By respecting his fears and not dismissing them, I was able to get him to agree to start using that toilet and now he is requesting it when we pass on his speech device.

This is the face of a kiddo who was just told he couldn’t go to a park he really wanted to play at but still managed to stay calm and not do any pushing towards it…and in case you are asking yourself why the heck the extra skin on my neck is visible in some pictures and not others, it’s mostly visible if I’m leaning.

We continue to advance our therapy programs for helping Tony tolerate “no” in the moment, but generally unless we have no other choice, we’re focusing right now on telling him “no” for items that have a lower emotional value to him. The goal is to progress up until he can tolerate a “no” for highly desired items in the moment and behave appropriately. He will definitely get there, but until he does, a “no” for an item that he’s grown to count on as part of his routine for so many years has to be carefully worked around in a way that gains his cooperation while showing respect for what others in the community want.

As our family’s schedule has changed with Andy’s new job, Tony’s routine has been shape shifting, which has made him temporarily more combustible- and all of that puts “pressure” on me. As I have considered how I feel internally about all of this, I decided there were some weights I didn’t want to pick up right now.

Instagram, for one. Honestly, in what little spare time I have I’d rather binge read Julia Quinn’s Bridgerton novels while listening to Barlow & Bear belt out “Burn for You” than spend time defending my brand choices in the comments section. I’m not interested in being an influencer, and I’m not interested in supporting community-driven cancel culture, so I’m not stopping using Jeffree Star cosmetics, Ofra, or Juvia’s Place. I know about the controversies surrounding those brands, and while I don’t approve of the specific actions, I just think if we take away people’s livelihoods because they’ve made a mistake or done something offensive, and the only place we leave them to go is the sewer, nobody has an incentive to grow or be better. So, I’m going to hold off on setting that up for a time when it won’t drain me so much to navigate that kind of on-line negativity.

I’m just a woman who loves her makeup and I loves using good quality makeup. And I would like to be able to share some of what I know with my family in friends here. I am more also than just the machine who powers through day after day of therapy, so I am going to make some shifts in my content on the blog. I will continue to have at least one post a month about our therapy work or a perspective piece, or something from what we’ve done in the past to get us where we currently are. But I’d like to share more of the happier parts of my life, so I’m going to put in one make up related post a month. And I may decide to put more of my poetry up. If I do, I think I shall cite the influence of what Ken Hallett did on his blog. So many of my older poems are darker though, so it is something I will think about a bit more about how I want to proceed with that. These times are dark enough as they are.

And so I can blow off some of the pressure related to the contents of this post, I’m going to tie things off with a few comments on some of the makeup I’ve worn and shown this month.

If you could see my leggings, it would all make sense: