CASEY
On Christmas eve, my mother and stepfather came over, donning masks, to exchange presents with the kids. It was a small gathering, pandemic style, but even so, I felt nervous. In my past life, I had imagined a future-mother-me hosting large gatherings, with children darting in and out of crowded rooms. Now I dreaded any social event, no matter how small, that would require dividing my attention. Even at nearly six years old, my son’s primary tool to regulate himself was my body and emotional energy. This made it impossible for me to easily eat or use the bathroom, let alone attend to guests. If I moved to another room, he would shadow me physically, demanding attention until he received it, or throw himself on the ground as his fight or flight response escalated into a scream or a parental intervention.
As I watched him unwrap a three-pack Avengers Lego kit, my stomach sank. I imagined him defeated by the fine motor task and the methodical instructions, propelling small Lego pieces into my face or watching them tumbling down heat vents. I envisioned meltdowns and tears. But it didn’t happen like that. Throughout the day, he worked patiently, following the directions with a little help from whatever adult was proximate and a degree of focus that I had never witnessed.
Later in the day, next to me at the dinner table, I could sense his determination even during a conversation wtih my mom and stepfather. This scenario would usually be too high of a demand for him to tolerate, but as we chatted, my son continued working. At certain points he interrupted to ask why we were “bumping words” and finally, with a smile on his face, said,
“Stop mama! You are driving me crazy!”
And so, we did. The day ended without drama and with the exhilarating sensation that, despite the shadow of the pandemic, this had been his best Christmas Eve ever. Maybe even his best day ever.
That night, when he asked to go to bed at the same time as his younger brother, 7:00pm, I was stunned. He wanted the night to pass quickly so that Santa would arrive. My husband and I gladly obliged, as we still had to wrap presents and stuff stockings. We finally climbed into bed at 11:00pm. Just as we were falling asleep, my son came into our room fully clothed, wide awake, and slightly manic, to announce that he was ready to open presents.
We explained that it was still the beginning of the night and my husband guided him back to his bed, helped him into another pull-up and tucked him in. 20 minutes later he walked into our room again to insist that it was time to start the day.
To parents of neuro-typical children, this might seem like the beginning of a sweet anecdote, a young child overcome with Christmas excitement, but I knew we were on the slippery slope towards a full-blown panic attack. That this was nothing like when I was a child, as I lay in bed full of wonder, straining to hear reindeer footprints on the roof as my eyelids drooped. I knew that we had seen this pattern with my son before, when a stuffy nose or new surroundings converted the demand of sleep into a perceived threat, leaving him panicked, rocking in bed and screaming that it was “too much”, that he would never sleep again. And in this moment, as an adult, my body felt the tension mount viscerally. It remembered the psychic imprint of his infancy when he would wake every twenty minutes all night, screaming, back arched, with no way to soothe him.
My husband got him back in bed four more times before we heard him shouting,
“I can’t do it, mama!” He cried, desperately, “I need to get up, my body won’t let me sleep”.
Suddenly, I remembered a blog post written by a 19-year-old Autistic man about managing anxiety during the holidays. He had explained that the demand of waiting to open presents can simply be too much for an Autistic child. He had suggested staggering present opening over the course of a week or more, to reduce sensory overload and anxiety.
I went downstairs, grabbed a present, popcorn, and a small bowl of homemade whipped cream, covering it in red and green sprinkles. As he opened his present, I sensed him start to calm. He ate a few bites of the whipped cream, he nibbled on popcorn, snuggled his stuffed doggie, and rotated his six pacifiers from his hands to his mouth, according to their temperature. We sat with him until 2:30am, when he had finally agreed to stay in his room until morning. At 6:00am, Christmas morning, he bounded back into our room, proud of his success, ready to start the day. And although I was exhausted and had no idea whether he had fallen back asleep that night, I was proud of him too.
CAITIE
This year, Christmas eve was just my family of four, my parents, my sister and her partner in our quarantined pod. It was a big change. We exchanged gifts with my brother and his wife in the driveway, went on a little walk, and had a roast chicken dinner in the evening. While I like a big shebang of a party historically, I’m tired, anxious, and overwhelmed much of the time, so I was grateful to have a quieter day this year.
My brother (having asked for my approval ahead of time), generously gave Rose a Leap pad for her Christmas gift. She was elated, and immediately got help setting it up. She explored and played with it for a long time, intermittently inviting different family members to look on as she discovered one app/game or another. When dinner time rolled around, she hadn’t eaten for many hours, and I knew she would crash soon. Unlike when she watches tv, with this new device, she was using both of her hands, and so entranced by what it could do, that our attempts to get her to eat while on the screen weren’t working.
With several five-minute warnings from us, and multiple “I’m almost done, I promise!” pledges from her, Paul and I finally had to help her put it away so that she could take a break and have dinner. She saw the high shelf I put it on, and immediately began attempting different ways to climb up and reach it. She jumped and screamed, attempted to climb up the wobbly row of folding chairs just inside the closet. This was while everyone else had just sat down to try to enjoy a festive meal.
Rose intermittently went from trying to reach the Leap pad, to coming over to jab, hit or spit on me, dart away and come back again. Paul took her upstairs to her room to try to help her calm down by staying with her. She kicked him in the groin and ran back down the stairs, came at me again where I was sitting at the table, hitting and spitting. This continued in a similar manner through most of the meal. When Paul was able to get her back into her room, we heard screaming and shouting, kicking and pounding on the door.
Finally, Paul somehow was able to help her calm down, and she rejoined us at the table, more somber, sober and self-deprecatory than her moments-before intensely-overwhelmed, lashing-out self. All signs indicated that she was through it, and I could relax again, but I had a lump in my throat, a pit in my stomach, and had a hard time swallowing the bite of food in my mouth.
The next day, after the excitement of discovering all of the presents from Santa and grandparents, Rose asked me if she could have her Leap pad again. She sweetly promised she would only use it for twenty minutes and get off of it no problem. While she could certainly say just what I wanted to hear, this time I tried a different approach.
“I know the way I made you get off the screen yesterday was hard for you,” I said. “I’m sorry that made you so upset. I was worried about you because I knew you needed to eat, and it was hard for you to do that when you were using your new game. This time, I’m going to let you use it as long as you’d like. Just take a break when you need to, and if you want to go on it again, that’s okay. We’re thinking of going sledding in a bit and I hope you’ll join us for that, too.”
“Okay!” she said. “Of course I will!”
And she did.
When I demanded she get off the Leap pad on our timeline, and then resorted to putting the Leap pad where she couldn’t reach it, I had returned to the default, traditional parenting approach again. And it failed us. Again. However, this time, I realized my error, gave Rose back a reasonable amount of autonomy, with context and my perspective included, and equilibrium was restored.