Once it became crystal clear that Zach’s mind was fully intact, I started to understand him more deeply. I realized that most of his behaviors could be linked to some trigger in the environment. As we got older I got more curious, and the tantrums mostly improved (see 5/1/21 post.)
I regret not getting this lesson much earlier in his life. It would have helped me better understand and protect him sooner, and it saddens me to recall situations like this one from 15 or so years ago:
Zach loves to swim and so do I. There is something magically refreshing and soothing about being in the water. For Zach, it was the only time his arthritis and bone pain seemed fully relieved. Secure in a swim vest his legs could dangle in the water while he propelled himself around, in what appeared to be a pain free space, a freedom rarely available to him.
Each summer we joined the local pool. It was a short walk and an even shorter ride on days too hot to push the stroller. One afternoon, after a couple hours in the water, we returned from the pool and parked in front of the townhouse. As we made our way to the front steps and up them, a woman and two little girls passed us on the sidewalk.
Zach and I rarely moved quickly, because it was not easy for him to navigate walking. We took our time, said hello to the woman and two girls, and entered our home. Once inside, Zach completely fell apart. Shoes went flying, he was erratic and hitting me, the walls, throwing anything he could grasp.
I was surprised, mainly because I thought we’d had such a nice afternoon. Not all of them went that way. So I was naively basking in what felt like the accomplishment of getting through the day without injury, blood or tears. Until we got in the house.
Zach was so angry, and couldn’t tell me why. I couldn’t calm him and quickly transitioned to damage control mode. Drop the pool bag, keys, wet towels and bottle of water to try and create a barrier between his destruction and our environment, by way of the only means I had: my own body.
I tried to physically restrain him. We struggled. My inability to protect either of us from physical harm was exceptionally emotional since we’d just gone from what seemed like contentment (one extreme) to terror (the other). This went on for several minutes until we were both crying, bruised and repeating (at least I was, in my mind) the familiar refrain of “What the hell?! I can’t win! We can’t win! I don’t get it! Why can’t we just have a few hours of peace?!” and on and on.
Our safe place at the time was his bedroom. It was cool, dark and had little stimulation. In it sat a hunter green gliding chair. That chair calmed us both, thousands of times. I first rocked him in it when he was 5lbs as a NICU grad at 6 weeks old. This was the same one I’d rocked his sister in before she died.
Calming by gliding continued on until Zach was almost a teenager, as his body was so small and it seemed to be the equivalent of a quick shot of Valium or some such sedative. The gliding, combined with decreased stimulation seemed to reset his (and often my) body, like hitting Control/ALT/Delete on the laptop. I knew where I needed to get him, but there was a full flight of stairs between us and safety, and the challenge of getting a propelling 45 pound machine/superhuman to the glider was still ahead.
But we got there. And we both wept. There were days I was teary, but this was a day for loud, free-for-all crying. I felt so helpless. I couldn’t comfort either one of us. We were traumatized by the physical infarcts, and the way I allowed myself to feel victimized with that refrain (Why me?!! Why us?!!) only kept the tears flowing.
After many minutes, maybe even an hour, we both settled. As his tense, combative body settled into mine we both surrendered and continued gliding. My mind combed the moments between the car and the melt down. What happened? Did his legs hurt that much from getting up the stairs? Was he mad the oasis of water was over? Was this emotional or physical pain?
I played this guessing game all the time, since Zach couldn’t verbalize his experiences and I had only little clues to put the pieces together. The grand prize of this daily game was to “figure it out” so we didn’t have to rumble anymore.
Then, an insight came. A clue, a recognition of the stimulus that turned our afternoon upside down: I remembered the two little girls. They were giggling, cute and enjoying their walk. But I hadn’t taken close notice of their stride. They stiffened their legs and arms, pointed their toes outward, and waddled like penguins. Oh my God. They were teasing Zach. They knew it, and he knew it. I missed it.
“Zach,” I said quietly, ”Can I ask you a question?”
“Yeah.” he replied after hesitating a moment.
”Do you feel angry?” Silence. No reply. I waited a few minutes and we continued to glide and sit quitetly.
”Are you sad?” More silence. More gliding.
Then with a blank stare to the floor, he softly said “Yeah.”
(My heart is sinking as I write these words because that experience was so heartbreaking and visceral I can feel adrenaline flooding my body right now.)
”Zach, were the girls outside teasing you?” I asked, as I felt like I was tip-toe-ing across a land mine, hoping not to set off any explosions.
Again, a quiet affirmation and continued stare “Yeah.”
“I’m so sorry.” I invited Zach to look at me, although more slowly, we were still gliding.
“I didn’t realize that happened, that must have really hurt your feelings.”
“Yeah” he responded, then looked up at me.
From there I fought back more of my own tears as I explained that it was wrong of them to make fun of him, but also that they had probably never seen anyone walk like he does and I was certain they didn’t intend to make him feel bad. I went further, talking about how we are all created differently and that was a good thing. Not sure he bought any of it.
But it didn’t matter. Peace was restored. I felt so connected to Zach and like I understood the hurricane that had just blown though our house, our physical bodies, and our hearts. Had this happened after the “Daddy’s ring” disappearance, I think I’d have been quicker to understand what flipped the switch and controlled the damage.
But maybe not. Even with all we know about our emotions, triggers and unplanned reactions we still can’t always step in between stimulus and response.
Zach and I were were both exhausted but I was warmly grateful for this rare connection. I again told him I was sorry I hadn’t understood, and that I would try harder. I told him how much I loved him and that I try my best to protect him but am not perfect.
Then we went downstairs, cleaned up the house, and drew up his evening tube feed and medications.