Note: This article is excerpted from our training tool Eliminate Barriers to Community.
I felt a hand reach from the booth behind me and grab my shoulder. It was a small hand, so without looking, I said, "Hi there, Sweetie." I imagined a child behind me, maybe a little older than my youngest son, was exploring this new person.
When the hand reached up the second time to touch my arm, I turned to greet my visitor. I met Kayla. She was with her grandfather. Kayla was 12 years old, but very small for her age. She had Down Syndrome.
The grandfather quickly apologized for her interruption. I told him she was fine, explaining that I have a couple special needs kids of my own.
As the grandfather paid the check, Kayla became increasing interested in me. At one point she was halfway in my booth hugging me like I was a long lost uncle. It was sweet and innocent.
As the grandfather proceeded to gather up Kayla and head out, he turned to me and said, "Thank you." I knew he meant more than just a simple thank you. I could hear in his words, "Thank you for accepting us. Thank you for not getting irritated. Thank you for being kind to my granddaughter." I understood exactly what his thank you meant because I've faced that misunderstanding with my sons at times.
A Personal Understanding
I turned back to my company in my booth, Brett Eastman, who has kids with special needs as well. He said, "Only a dad of special needs kids would understand that." He was right. At an earlier point in my life, I would have freaked out and moved to a different booth very quickly. But once you're in the special needs community, it's a different story.
Out of my four children, my two oldest sons both have special needs. My first son was born with a birth defect which has led to variety of physical and behavioral issues over his 13 years. While he is very intelligent and high functioning, his world is full of specialists: gastroenterologist, psychologist, neurologist, orthopedist, audiologist, and so forth. He attends the South Carolina School for the Deaf and Blind, which has further immersed our family in the special needs world.
My next oldest son is nine and is homeschooled. He's never been in public school because he would never tolerate it. He is the most intelligent member of our family, and he's very kind, sweet, and conscientious. Yet at the flip of a switch, he can enter into an autistic rage that defies all reason. Imagine Bruce Banner becoming the Incredible Hulk: We live with a nine-year-old Lou Ferrigno.
Having children with special needs doesn't make me an expert, though. After all, there's a wide variety of special needs out there. This is exactly what makes it difficult for churches to serve families with children who have special needs. Special needs include various levels of ability, and may include physical, mental, and behavior issues. And, of course, some children have more than one special need.
The special needs world is complicated. It's a world of IEPs and specialists and accusing stares. It's a world that outsiders can't really comprehend, full of stress and financial pressure—which often lead to divorce.
Even more importantly, people in the special needs world often lack community. One therapist in Colorado commented, "These families really don't have any friends." Often their children's special needs exclude them from normal relationships. Our society, in general, is very busy and isolated. It's hard enough to make time for a friend, let alone a special one. And these parents don't want to be pitied. Instead, they'd like to be heard and seen.