We waited in the crowded reception area at our family dentist fulfilling six-month check-ups. As my two boys tackled the day’s homework waiting for their sister, I caught a glimpse of a woman across from us staring at my son working on math problems in his notebook on the floor. He looked up to ask me a question about borrowing from the next column; his peripheral vision snagged her. His brow furrowed. I quickly answered and directed him back to his paper. While his pencil slowly formed the number eight, I heard a low growl emerge from him. His eyes darted to the opposite side of the room, locking eyes with the woman for a split second, then back at the paper. It happened again, as awkwardness grew inside me, yet curiosity didn’t stop her stare. By the third growl, I poked my son with my foot and asked him to pay attention to his work. He tried. But it happened again. Slapping the page, he abruptly threw his pencil down, stood up and declared to the room of people sitting in the circle, “That’s it. I can’t concentrate with that lady staring at me.” I wanted the floor to swallow us seeing smirks and shoulders bobbing, others suppressing laughter. I prayed. I understood the woman’s curiosity. I also understood my son’s frustration of trying to live life unnoticed with unspokens in the divide.
To redeem the situation and provide a small element of grace for the woman who immediately closed her eyes, bobbed her head forward and pretended to suddenly be sleeping, I said quietly, “Say hello. Maybe she wants to be your friend.”
Her?”, he demanded loudly, walking toward the closed-eyed woman, finger pointing directly at her. “She doesn’t want to be my friend. She just wants to be rude.” A few snickers emerged from the circle, as his older brother leaned in towards me and confessed, “He’s got a point.”
We are not strangers to being noticed, stared at, or to the hushed conversations of parents trying to cache the thoughts of their children before words tumble onto their own field of humiliation. And that’s okay. With time my son Connor became more aware of who he was…a boy who [by the way] was born with an extra chromosome…and learned to stand in the gap for those teetering between the reality of the person with special needs in front of them, and their muted questions and fears. Above all he learned to embrace the important: he was a boy, loved by his family, he loved back deeply, and he was created by a masterful Creator. To this day, he continues to absorb that God created his inmost being, He knit him together in my womb. And Connor praises God knowing he is fearfully and wonderfully made; God’s works are wonderful. He knows that full well. [Psalm 139:13-14]
I can’t say why the woman in the dental office stared so blatantly and so buttoned up. When called to accountability by a second-grader who had Down syndrome, she chose to feign narcolepsy sitting amidst a circle in a large, sun-filled dental office, and we were unable to talk to her. It was that awkward for her. While my son Connor may have felt the sting and stare of his disability in that moment, I wondered if she was more fascinated with his ability to independently add and subtract double-digit math problems. I reflect on that moment…maybe it ripped the “r-word” label off a little boy and it rendered her speechless.
From pre-school through fifth grade, Connor attended public school in classrooms with ‘typical’ children. He rode the school bus with his siblings, attended birthday parties and was wholeheartedly embraced by his elementary school peers. As children asked questions in school, they were answered in school. Connor knew he was different, but he knew he was more “same”.
Questions are okay. Questions are good. We have to allow each other’s stories to be told in the context of God’s handiwork…that every person God creates is a reflection of Himself [Genesis 1:27]. When I was approached by a Sunday School teacher sharing her grievance over a classroom of nine-year-old boys beginning to snicker and tease Connor in the class she taught, she invited me in to talk about Connor…with Connor. He delightedly shared their commonalities (the NY Yankees and Ninja Turtles) and I was able to explain the disparities, while celebrating the differences. Outfitted with a bag of supplies, we talked about why it was challenging to sometimes understand Connor when he spoke. I explained that his chromosomes, the same things that gave each of them the color of their eyes, their hair, their skin…gave him a mouth that was narrower, a palate that was much higher and a tongue a bit thicker…and then pulled out a big marshmallow for each child. As they took turns popping marshmallows into their mouths and encouraged to say, ‘hello my name is _______”, each one giggled as the awkward, garbled expressions that emerged; and began high-fiving Connor. Pulling thick children’s ski gloves out of my bag, I explained the development and difficulties of Connor’s fine motor skills as they practiced writing their names with a gloved hand and pencil. The bridge narrowed with each new prop and discussion. Within the next week, Connor was invited to church kids’ homes for play dates, and for the first time without me. The more we seek to know a person, the divide narrows.
We cannot fear what we don’t understand. To be known as a follower of Christ…or even just a good person for that matter, we have to choose to embrace the tension of getting to know each other deeper and seek to understand what we don’t know about each other. And do it with grace.
If you (or your children) are wondering about people with special needs, here are a few thoughts for you. Nothing scientific or focus-group insights…just observations and thoughts from my corner of the world:
- People first. My husband and I have not raised a ‘Down syndrome child’, but rather, raised a child who is now a young man. He happens to have Down syndrome.
- People with special needs are the same.
- People with special needs are different.
- It’s better to talk rather than stare. Say hello. Some parents of children with special needs may not be ready for a barrage of questions as they may still be emotionally grieving the “typical” child they had dreams for, but talk to them and allow them to share to the level they are able. Celebrate the beautiful child they’re raising!
- Words matter. Words like retarded, deformed, crippled, suffers from, victim of, handicapped, unfortunate, pitiful are offensive. Handicapable and able-bodied are patronizing. Replace the term “normal” with the word “typical”. Please stop using the word “retarded”, whether you use it to describe a person or a situation. I’ll say it again. It’s offensive.
- If a person uses a wheelchair, be respectful. A wheelchair is an extension of a person’s body. Don’t lean or hang on the chair. Ask permission before pushing it. Make an effort to position yourself at his/her eye level when talking.
- When greeting a person who is visually impaired, identify yourself and anyone with you. Ask if you may assist him/her. If the answer is yes, offer your elbow and guide them.
- If communication is a challenge and you encounter a person you may not understand, communicate honestly. Don’t say you understand their speech when you don’t. Simply ask the person to repeat him/herself or show you what they are trying to convey.
- If a child with special needs is with his/her parent, don’t ask the parent the child’s name or other questions about the child. Ask the child and enable him/her to answer to the ability he/she is able to.
- Get to know people with special needs and I guarantee you will discover countless facets of God’s character and reflection.
By the way, Connor loves the Jesus who walked the earth in dirty feet, and asked a lot of questions. I love the people who are willing to walk across muddy boundaries and ask a lot of questions. They help us learn and grow and enter into each other’s stories.
(Written by a not-so-special parent…who just happens to have been blessed with a special kid! It’s all grace.)