The world has not yet convinced my son, 6 years old and with Down syndrome, that he needs material possessions.
As Christmas rapidly approaches, my Facebook feed is filling with pictures of children perched on Santa’s knee and overtired parents rushing to fulfill long Christmas lists. Not so much in our house. My son Bobby, 6 years old and with Down syndrome, cares not one bit for the trappings of the holiday season.
Grounded in the concrete, he does not identify with stories of Jesus’ birth or Santa Claus and his busy elves. If I showed him a gift placed under the tree with his name on it, he would refocus my attention on an immediate game of balloon volleyball. He has never asked for a gift and is largely disinterested when handed a wrapped object.
He doesn’t get it.
Sometimes it makes me sad that he misses out on so much of this season. Thinking back to my own childhood memories, this was a focal point of the year. A time made for wonder. I worry about Bobby’s differences—that the holiday season is yet another aspect of his life where he is not able to follow the norm.
My worry is egocentric. When my partner and I received Bobby’s prenatal diagnosis I immediately began to sort through the “whys” and “why me” of my son having Down syndrome. In my tunnel vision, the best answer I had was that his genetic anomaly was a punishment and a lesson for me. I had long measured my own self-worth by my heavily analytical nature, my ability to understand complex ideas with a level of detail that surpassed most. And I was often dismissive of people who could not or would not keep up with my rapidly evolving thoughts. So in those early days of Bobby’s diagnosis, I imagined myself in Hades, next to Sisyphus and Tantalus, doomed to an eternity of caring for a son who would not understand much of anything.
However, time has taught me that even beyond the supreme arrogance I showed in assuming a human life was being created for the sole purpose of giving me a much needed kick in the pants, my assumption about Down syndrome and the ability to understand was just plain wrong.
I think of Bobby as having a thick layer of insulation between him and the world. The insulation slows his reaction time, makes it more difficult for his inner thoughts and actions to express themselves to the rest of us. And it makes it more difficult for the information of the world to reach him.
This insularity is a challenge when teaching him vocabulary or reading or math. What another child might understand in four or five repetitions may take Bobby 500 repetitions to learn.
But the insulation that makes it more difficult for useful information to reach him also makes him immune to much of the toxicity that seeps into the rest of us. Because he processes less than the typical person, the standard of what gets through is higher—to resonate with my son, information must add intrinsic value to his day to day happiness. Otherwise, it is ignored.
He is a boy who has not travelled far from his essence, his internal guideposts. He does not lack for external stimuli, so he does not crave the “more” of the holidays. Certainly we will present him with new toys on Christmas and he will enjoy the moments of play and, especially, the extra attention from my partner and me. However, he does not hang in anticipation of Christmas morning nor would he miss the lack of a Christmas day completely. The world has not yet convinced him that he needs material possessions. And, for him, without the need of a full Christmas stocking, Santa Claus is quickly reduced to a scary fat man with no tangible reason for being.
Bobby does not yet need religion either. His inner spirituality has not been convoluted by the false morality of our times, so he does not need external guidance in that regard. When the world becomes overwhelming for Bobby he does not turn to a higher power; he instead retreats to a quiet place and calms himself by repeating a low guttural chant, often while methodically sifting sand or soil through his hands. “Stimming,” as the behavior is commonly called, is generally seen as socially unacceptable, an undesirable byproduct of a neurological abnormality.
Of course, if I were to spend several hundred dollars on a meditation class along with yoga apparel and apparatuses, the instructor would likely teach me to calm myself by repeating a chant very close to the one my son conjures up instinctively. The yogi would be hailed as an example to all who wish to find internal truth and my efforts to retrieve my essence would be hailed by many as progressive.
The difference between stimming and meditation? Like religion, like materialism, the preference to classwork over instinct is in the force-fed belief that what we mostly need in this life is external to us. We are robbed of our essence at an early age and then sold replacements under various guises for the rest of our lives.
Not so for my son. At least mostly not so, yet. That may change some over time. And some of it needs to change. Not all of living close to our essence works in this world. He is impatient. Stubborn. He will likely need some help with his daily living activities for the rest of his life, and more so if we cannot teach him to accept some of the realities of the world.
Too often, people with Down syndrome are either celebrated as “angels” for the simplicity of their life view or are condemned as “too incompetent” to have a valuable purpose in the greater world. The reality is, like all of us, they live on the spectrum of embracing their natural instincts/spiritual essence and interacting with the world in an effective way. Both sides have value.
In my family, Bobby sits closer to the natural. I am more adept at navigating the world. Far from being my punishment, Bobby is my complement. It’s a valuable relationship if not always a comfortable one. If Bobby ran to sit in Santa’s lap and woke at the crack of dawn on Christmas morning to open presents, I would not need to challenge the status quo, to wonder if my own happy childhood memories were grounded in something innately worthwhile or more a byproduct of too many Saturday morning toy commercials. If math and reading came easily to Bobby, my pride in his academic achievement would reinforce the way my traditional intelligence long fed my own self-worth.
But, comfort aside, in a world without Bobby, I would have been left seeing people with developmental disabilities as people who lacked. I would never have understood that in fact they possess a different kind of intelligence, a way of seeing the world that I have long been blinded to.
I would not understand that what I mostly lack in my life are not things that need buying, but rather a wisdom that allows me to better filter what I really need to achieve a happy life. And this realization allows me to give my son the extra help he needs to navigate the day-to-day without seeing him as a burden. Because while I teach him, he is teaching me.
Anne Penniston Grunsted is a Chicago-based writer who focuses on her experience with disability (her son has Down syndrome and she lives with mental illness) and parenting. She has published in Chicago Parent and won the 2014 Nonfiction prize from Beecher’s Magazine. She lives with her partner and son in the Uptown neighborhood of Chicago.