Sometimes, to get to the heart of the holiday, you've got to look beyond the expectations.
Recipes, music, parties, and rituals - most of us proudly carry our family’s holiday traditions along with us, almost inherently understanding that it’s just what we’re all supposed to do. We don’t question whether Great-Grandma’s recipe actually resulted in the best iteration of our favorite cookie - we just assume that it IS the best, simply because it came from her. And to us, it is the favorite because there’s all sorts of sentimental value attached to a handwritten recipe card that travels from one generation’s table to the next. Both my husband and I come from families who value deeply-held traditions, and we’ve always loved celebrating holidays. I have wonderful childhood memories of precious times, and, like any parent, have looked forward to passing traditions down to my own children since I first decided I wanted to be a mom.
But when one of your children has Autism Spectrum Disorder, like our son Joey, you realize that much of life is anything but conventional. Not only does the neurological disorder present with communication, social, and behavioral challenges for the 1 in 59 who are diagnosed, but it challenges the expectations we as parents have about how we will experience life.
And when this time of year comes around - a time marked by traditions and expectations - the need to let go resonates in a far more powerful way than the sound of any holiday bells ringing.
For people with Autism, routine is critically important. While most joyfully count the days to winter break, excited about time off to sleep in, be spontaneous, visit friends and family, and embark on new adventures, for families like ours, holiday breaks are often fraught with anxiety. When Joey is away from his residential program, Anderson Center for Autism, the structured life he knows and loves is disrupted, leaving him frustrated and anxious.
When he has been with us during the holidays, we have often felt anxious as well. Because Joey dislikes loud, crowded rooms, which are totally overstimulating to him, we’ve had to be very deliberate about the activities we book. Family gatherings are far from relaxing; my husband and I have always had to tag-team to help Joey through those festivities - taking him on walks and creating space for him to decompress, even when we wanted to lean into the fun. Not only are parents like us sacrificing on a moment-to-moment basis, but through it all, we’re in a state of fear and hypervigilance, always on edge as we anticipate the likelihood that behaviors could escalate at any time. And during a season that is supposed to be magical, it can feel disappointing to forgo customs we’ve always loved.
But as time has passed, and our son has grown into a young man, it has become increasingly difficult for Joey to be in the ‘festive holiday’ type of environment altogether. Heartbreaking for parents like us who treasure the holiday memories of our youth and want nothing more than to recreate them for the next generation.
So our expectations about holiday traditions have, sadly, had to be reinvented - because there’s nothing ‘conventional’ about life when you have a child with Autism.
I had to liberate myself from the deep maternal need I felt to create the same experience for Joey that I had growing up. He didn’t experience holiday magic in the same way, and I had to accept that the customs of my childhood simply didn’t work for him.
And given the spirit of the season, which, no matter what your faith tradition might be, is really about love, I recognized that I needed to give him the ultimate gift - allowing him to be where he feels most comfortable: in his own residence at Anderson Center for Autism. It’s a space customized to meet HIS needs, and it’s where he can shine far brighter than he can at any holiday party.
And it has certainly taken some time, but I have come to the realization that it is okay for me to let some of the expectations go. And it’s okay to enjoy certain celebrations without Joey. Thanks to Anderson, I have the luxury of spending time with family and continue my long-held holiday customs with my other two children. We can all see Joey during periods of downtime, and we embrace those days as well, even though they may look different than what we had imagined. The best gift we can give to him and to our other kids, is to honor Joey’s needs and refrain from imposing our own expectations about the holidays onto him.
It doesn't really matter if Joey doesn't enjoy crowds, noise, or have the patience to rip paper off a box. It doesn’t matter if we continue to carry on every single tradition from our youth. Some customs just don’t work for our family. And that’s okay.
But one tradition always remains, and it fills my heart year after year: celebrating the love of family, and honoring each of my kids for who they are and what they need.
And isn’t that what the spirit of the season is really all about?