I did what a lot of people did this week. I shared our highlight reel on Facebook. The smiling photos of each of my children enjoying Christmas but in reality we are happy to be moving on and away from a holiday whose traditions punctuate the masterful act of pretending that we find ourselves performing time and time again.
I was standing in the dining room on Christmas Eve folding a load of laundry while everyone in the house was occupied in other rooms. Enjoying the quiet I happily folded pants and socks until I realized that Mark was on the same floor with me and it was eerily quiet. I walked into the living room to find him crouched between the chair and the fireplace staring off into space. I knelt down next to him and just stared at him for awhile. I waved my hand in front of his face and he looked at me for a second, and then went back to staring. I talked to him, tickled him and tried to get him to turn back into my happy, giggly boy, and instead he continued to look away while he slowly picked at his foot. I thought for a moment about how if I caught Jillian sitting in the room without a TV show on, just staring blankly, how concerned I would be. But for Mark, this is normal. And this adds to the pretending. We act as if this is what is expected of a five year old, and deep down we know it’s not. With the weight of that thought I began to cry. I cried because I couldn’t keep it together; the act of ignoring the obvious became just too heavy. So I scooped him up in my arms and whispered in his ear, “one day, when we’re in heaven together, will you look into my eyes, and will you give me a big hug?” No response. I then asked him if he wanted to watch Daniel Tiger, and his eye brows lifted slightly so I put on the same DVD that we have been playing repeatedly and he got up and began sifting through a pile of alphabet letters.
Later that evening he had a meltdown. And as usual we really don’t know what set him off. We make guesses but whatever we come up with doesn’t usually give us much insight into how to help him through it. So I did the only thing I could think of, I played Lumineers and turned on the slideshow feature of my photos folder on my laptop, and displayed family photos for him to watch as he listened to Ophelia. He curled up in a chair and slowly the tears dried up and the calm came. But in the process I know that it made the evening hard because my whole family had to collectively pretend that what was happening wasn’t incredibly stressful and sad. If autism didn’t have its grip on our boy, he would be in five year old glory anxiously awaiting his presents and asking Alexa where Santa was in his journey. He would be fighting with Jillian over who could find the Christmas pickle first on Christmas morning. And he wouldn’t be slumped over in a chair watching family photos go by on the screen from 2017.
Christmas morning wasn’t much different. As we began to unwrap presents, Mark retreated to the back of the playroom and surrounded himself with his toys, and sat with his back to us as he flipped through familiar books. We knew that Mark’s pile of presents would be opened last and we would be doing the opening. We knew that the mess would stress him out and it did. And we knew that he would have very little interest in participating.
We did manage to give him presents that brought that unadulterated joy and excitement that we all hope for, even though it wouldn’t be something anyone would generally buy for a five year old, like a book about castles, a new version of his ratty Fisher Price puppy and a musical trolley hand picked by his sister. Surrounded by the objects of his affection he beamed. And just that moment of his bliss made my morning. I hovered over that photo on my phone of him happily clutching his prized possessions and felt a sense of accomplishment that we had achieved some level of joy for him.
And then I watched as he began to line his toys, along the couch, on the ottoman, in a basket and on the table. He carefully positioned them equidistant to each other, and then crouched into different positions to study the angles of his creations. He was happy, there was light in his eyes and he was at home. And even though I knew he shouldn’t be lining, and he should be playing more appropriately with toys, I basked in his happiness because I knew that it might disappear rapidly for no apparent reason.
The days that followed the holiday were filled with cleaning, constant decluttering, cursing at the WiFi when the signal would weaken and drop Mark’s show, hiding toys that would cause unexplainable tantrums, and feeling defeated each time we would discover that he had an accident despite our best efforts to stick to the potty schedule.
People have asked me this week how our Christmas was, and I give a socially digestible answer but really it was hard and exhausting, because it’s always so with holidays. Each year they are a bright, glaring reminder of where we are, where we’re not and what we are pretending to be.
We love you guys so much! ❤