Growing up we had a pretty awesome tradition: Spaghetti and meatballs for dinner, followed by the opening of one Christmas gift in front of the tree, then off to 11pm Christmas Eve services. On more than one occasion the snow would start falling while we were in church, and we could see the thick snowflakes through the stained glass windows. It felt to me, even as a child, like Blessings, Grace and Miracles were falling on me and the entire congregation as we moved from “Eve” to Christmas Day. Beautiful.
Of course I’d intended to carry on similar traditions once I had a family of my own. But that never worked out well, since Zach’s needs far outweighed our ability to force us all into any situation, including church, that set us up for multi faceted failure. I was able to get to Eve services once in a while, but never as I’d done growing up.
We still tried to create traditions, celebrations, and moments of “holiday” connection, but If I knew then, what I know now I would have taken a different approach. I don’t criticize my then self, for doing what I knew to do, but I am sharing this especially painful memory, to in some way illuminate the choices we don’t think we have, for other families trying to force a square peg into round holes (in any form), in this example from Christmas Eve.
My folks came up from their winter home in Florida and we were due to have dinner and spend the night with them, in their summer home which is about 45 minutes from where we lived. I imagined my angelic mom, making and baking dinner and goodies, with Christmas music playing, candles burning and some fancy apron protecting her pretty clothes that she would wear to be festive. Such a peaceful scene at her house, in the hours leading up to our arrival.
But at our house, the scene was much different. It was painful, desperate and humiliating. Zach never discerned between what “day” it was or that certain events warranted certain elevated moods or behaviors. Although this is no longer true, and he grew to love holidays, on this particular Christmas Eve over a decade ago, Zach had no interest in doing things differently.
Side note: For families of special needs kids, we know a secret that most typical families do not: Holiday time for us is anything but fun. It meant no school, fewer nurses, less help, more tantrums because the “routine” was off, less sleep and more chaos. Despite our best efforts, when a 10 day school “break” arrived, it wasn’t something to be celebrated. It was something to brace for.
This year was no different. I don’t recall the exact source of Zach’s tantrum that day. Maybe we couldn’t get him into the shower. Maybe he didn’t want his G-tube feed. Or maybe something triggered him and we had no idea why he started throwing things and going into destruction mode. But whatever the origin, Zach’s behavior landed him in his “safe space” which was a small, padded structure we had built to protect Zach, us and our home when he couldn’t control his aggression.
Before Zach could exit the safe space, he had to agree to the required behaviors first: “Zach, what do you need?” He would reply “Quiet hands, quiet voice.”
“Correct” I would say, “C’mon, let’s get ready to go to Nana’s.”
“Ok.” He would say. And we would try it again. Either we stayed safe, or he went back in and was forced to be safe. Lots of ways this scenario played out, but never quite like it did on this day.
More on what happened next, in my next post.