My eyes keep wandering back to the Candy Land board on the table beside me—a colorful path winding through sugar-laden landmarks, from “Cupcake Commons” to “Gummy Hills,” and “Chocolate Mountain.” “Princess Lolly” and “Gramma Gooey” warmly greet visitors and pieces of chocolate, licorice, and gummies spill over onto the path as the players make their way to the “Candy Castle,” an intricate, sprinkle-covered palace.
I realize that entering into the holidays is like walking into a life-sized Candy Land game. Much-anticipated family gatherings, gift-openings and other activities represent the bright, but easily overwhelming stops along the Candy Land board. Of course, there’s the obvious food pyramid inversion that happens with holiday treats and generous grandparents.
Our holidays also include travel–between five and ten hours by car–leaving us feeling tired, but wide-eyed, and excited when we arrive. It is hard for any family with small children to “hold it together” with day after day of extra input and unpredictable schedules, But for me—a parent with a child with autism, it is impossible and not even a goal we set for ourselves (or, should I say, set ourselves up for?). Instead, we take a one-day-at-a-time, or even a one-moment-at-a-time approach, with a watchful eye on my little boy.
My focus is to help him feel as comfortable as possible so that he can engage and connect with the family members around him. If he is overwhelmed or his sensory needs aren’t being met, he is not only unavailable for social connection but also disrupts the social scene around him.
Overall, autism has caused us to draw back slightly from the amped up “special” part of the holidays in favor of grounding ourselves in the familiar. We keep bedtime routines. As much as possible, we do something physically active, preferably outdoors, in the morning. My kids are looking forward to shoveling snow with Papa, rolling big snowballs, and walking their “cousin dog,” Gus, in North Dakota this weekend.
We prioritize a brief quiet time in the mid-afternoon. We scan each day to identify the most challenging event, like the big family dinners, the church service, and we bookend it with activities that meet my son’s intense gross motor needs, provide rest and connection, or give him time alone with Legos or books. Overall, I have found that naming my son’s needs and also claiming them for myself (i.e. “I could use some down time before dinner”)—helps normalize his struggles and invites others to appreciate and meet where he is.
We are so blessed to stay with my parents or my in-laws who have been observing and listening over the years, and who understand enough to be empathetic, flexible, creative, and curious. While this has been an ongoing process of understanding and talking about my son’s unique brain, body, and needs, I am realizing this year that my fumbling and hesitant attempts to share our journey with extended family were worthwhile. I am entering into this holiday season with less anxiety, I think, because I feel more understood and supported by my extended family than I have in the past.