In 2004 my youngest son Eli was born with Down Syndrome. He is now 15 years old, and has a host of other diagnoses behind DS which includes Autism Spectrum Disorder, Sensory Processing Disorder, Auditory Processing Disorder, Apraxia… the list goes on. His diagnoses do not show the whole picture of my son. He is kind, gentle, quiet, sweet, funny, observant. He is developmentally disabled, 95% non-verbal, processes life completely different than the world around him, and sees “beyond the veil” better than all of us supposed “smart” people. Eli is a beautiful human. That being said, he and the world around him clash on a daily basis. Since he was born, he and I walk this life path side by side. In the last 15 years, I have watched as Eli’s differences tend to expose “true colors” and the depth, or lack of it, in people, including my own.
When Eli was about two weeks old, we finally got our act together with the chaos of a newborn and two little boys, and made it to church. I was still feeling very raw and reeling from the unexpected news that our baby had DS. People immediately either judged us as having some sin our lives that caused this “ailment” to my son, or held us up as saints for having been chosen parents of a child with special needs. I was overwhelmed with both. Having been raised with plenty of finger wagging, self appointed upholders of the “law,” it was with grief and horror I questioned whether something I’d done had caused this to be put on my child. I was equally overwhelmed with those that put me on a pedestal for being “chosen” somehow to be a special needs parent. “Chosen?” I wasn’t sure I wanted to be “chosen.” I was both in love with my son and scared of the future. After all, the entirety of what I knew about Down Syndrome, I’d learned in 6th grade science. All I could remember is it had something to do with the 21st chromosome. I couldn’t remember if it was one too many or one too few. I was full of anxiety as to whether I had what it took to be a good mother to a “special needs” child. As I wrestled with feelings of joy at my baby’s arrival, and feelings of guilt, fear and grief for the loss of the future I expected for him, I came to church. I was a well-dressed package of hormones and raw emotions, wearing a smile but continually on the edge of tears.
This is the state our children’s pastor found me in when she caught me after the service to politely inform me that I was due for my turn to volunteer in children’s ministries. I stood there stunned. She never even acknowledged the new baby in my arms, by the way. But she was right after all. The rule was, “If your children attended children’s ministries, you had to serve your time and carry your share of the load.” I had no emotional or physical strength left to be cheery and lead children. But she was right. It was my turn. She was all politeness and was “nice” by any standard of speech and facial expression. But what was lacking was any insight or even attempt at using her imagination as to my anguish and need. I was “nice” in return, holding my newborn baby with Down Syndrome, and burying my fear and grief, I politely told her the obvious, as I fought back bursting into all-out sobs. I had JUST had a baby and was overwhelmed with doctors appointments, case managers, not to mention all the things that change in life with the addition of a typical newborn in the family. I politely told her I literally could not do that while nursing and carrying a special needs, newborn on my arm. I told her that I understood that was the rule, and therefore my other two little boys would have to withdraw and not attend children’s ministry. She reluctantly, but politely, decided to excuse me, “Just this once.”
This woman was known for being a “nice” lady. She was a hard worker and served with fervor, logging many hours organizing children’s ministry. She was polite, never cussed and was always “nice.” By the book, she was always “right” in her dealings, and certainly looked and acted the part of a children’s minister. But kindness?
I know that our culture tends to use the terms “nice” and “kind” interchangeably. But in looking at the definitions of the word, nice, and the word, kind, we start to see the differences. Nice is defined as: “agreeable: satisfactory.” It can encompass kindness but does not necessarily include kindness. Kind is defined as: “To give pleasure or relief, a sympathetic or helpful nature, characterized by sympathy or forbearance (refraining from the enforcement of something, such as a debt, right, or obligation, that is due. The act of patience and leniency.” Hmm… that sounds like grace to me.
In my walk next to Eli in this life, I have found that one can be kind and not thought of as nice. I have a friend who has a reputation for being… well… rough around the edges. His friends and acquaintances describe him as having “no filter.” He is not politically correct, cusses like a sailor, and says things that make the average person blush. His wife is an angel. And before you ask yourself what a lady like her would see in an unpolished jerk with no tact, let me tell you a story.
Not long after we met this couple, (we’ll call them Stephanie and George), we were all headed to a local farmer’s market on a beautiful Sunday morning. Our older boys had other plans, and so it was just this couple, their two dogs, my husband, myself, and Eli, who was 13 at the time. Outings with a child with autism can be really stressful. Particularly when our family is interacting socially with others who may or may not understand. We didn’t get too far before we had a potential conflict. My husband, Jim, and I had intended to drive separately so that we could more easily accommodate Eli’s needs and anxieties, and avoid more awkward moments. But the farmer’s market was 45 minutes away, and Stephanie and George thought it would be more fun if we all rode together in their car. We tried to make our excuses that we could take care of Eli in our vehicle easier without troubling them. But it was George that spoke up and asked very sincerely what Eli needed. As I explained, he assured us it was no trouble and we could all just be patient and accommodate him. So we loaded the car with everything but Eli. Eli refused to get into the car. He held his fingers over his ears and physically refused to even go in the direction of the car. When I gently tried to take him by one of his arms that was raised to plug his ears and assure him all was well, he dug in, and stiffened. He was frozen with fear and anxiety and pulled in the opposite direction making protest noises. This went on as everyone watched and waited. My husband and I are used to this but we feel the pressure when others are waiting on us, and a spectacle is unfolding. I apologized and told them we could most certainly drive separately. All the while, I’m thinking, “Well, it’s only a matter of time before we find out whether they will be friends, or whether our life is too messy and complicated for them.”
Did I tell you they have no children of their own besides their pampered pooches? Well, as we with children all know… some people without children can be completely devoid of understanding when it comes to the logistics of doing anything with children in tow. That goes triple for children with special needs!
As I started to sweat at this impasse with Eli refusing to get into the car, I apologized again for the delay. George came up next to Eli and me. With compassion and kindness he quietly said, “Don’t EVER apologize. You take the time he needs. What can I do to help?” His kindness moved me to tears as I explained that Eli loves dogs but he is afraid that they will bark. Loud sounds actually feel like physical pain to people with sensory processing disorder. Lucy, one of Stephanie’s and George’s very sweet dogs, was intermittently barking because she was excited to take a car ride. Eli was frozen with fear. George went over and quieted Lucy and got in the car and invited Eli in, petting Lucy, both to quiet her and to show Eli how nice she was. He patiently waited for Eli to decide to get in on his own terms. Eli finally got in the car so we could leave but refused to take his fingers from his ears till we were at least 20-30 minutes down the road. Finally he decided it was safe and took his fingers out of his ears to pet both dogs. Molly, the golden lab seemed to sense what Eli needed. It was beautiful to watch her comfort Eli. She walked close to him at the Farmer’s Market as we walked to the beach and to the ice cream parlor. Stephanie and George were patient and so very kind with Eli the whole day. I have to add that Eli and I have food allergies and eating out can be challenging. This can be met with mocking and joking, or just irritation because of the inconvenience of having to choose a restaurant based on food options. But both George and Stephanie were accepting and proactive in finding a restaurant that would be able to accommodate. It ended up being a beautiful day spent with beautiful people. For a family that is used to dealing with people’s impatience, intolerance and rudeness, it was such a gift. I believe that day embodied kindness. Stephanie and George chose simple acts of tolerance, patience, and grace.
I can tell you that I couldn’t care less that George has “no filter” and cusses like a sailor. He can be abrupt. He is shrewd and blunt in business. He doesn’t put up with “BS” as he puts it. I doubt most people would describe him as “nice.” But in my opinion, the man is kind in the true sense of the word. He would give a stranger the shirt off his back if one truly needed it. And he sees and advocates for the vulnerable.
I’m not saying manners are not important, and that we can’t all strive to be the best of both nice and kind. But if I had to tangle with a person that is nice but not kind, or a person that is kind but not particularly “nice,” I would choose kind. I tell these stories to point out the difference. The church is losing masses because we are being nice, but have lost the reputation for kindness somewhere along the way. People can be nice… and fake. Nice, righteous… and completely lacking in love and compassion. How is it that those that identify themselves as Christians have become known for being some of the most intolerant hateful bunch on the planet. Oh but we don’t cuss! And we don’t abort babies! But are we selfless and kind when it’s inconvenient, or uncomfortable. How is it that we are now known for politics and ideology that tolerates or even embraces leaders that self-righteously shout intolerance— promoting an us vs. them survival of the fittest, and look out for the number one attitude! Nobody will own it but actions and votes say, “Who cares about the poor, the vulnerable, the stranger. They must have done something bad or be bad people if something bad is happening to them, right?!” Check your doctrine, people! I’m sure the Pharisees in Jesus’ day were considered very “nice” people by their friends. But Jesus himself was too busy ministering to the poor, the vulnerable, the stranger. He was too busy bringing relief, compassion and sympathy, refraining from the enforcement of things such as a debt, right, or obligation that is due. He was busy showing grace and kindness… which eventually got Him killed.
The older I get, the less I care much for nice, and the more I value kindness. Nice can be others focused or … it can be self-focused as we behave nicely to be seen in a positive light. Though it is pleasant to be nice, kindness is others focused. The very nature of kindness demands depth, discomfort, inconvenience, tolerance and love.
Sarah Sottile Lee writes from Colorado.© 2017 - 2022 When People Are Kind. All rights reserved. Click here for content usage information.