When I was out shopping a couple of weeks ago, walking through the parking lot, I noticed three grown women standing near the rear of a car. I thought perhaps they were friends who met each other in the store and were chatting.
As I got closer, I saw one of the women leaning in close to another one. What could be going on? The shorter one was wiping the taller one's nose with a kleenex. As I observed their behavior for a moment, it became clear that the tall woman was developmentally disabled.
This turned my thoughts to Jonalyn and what the next few years with her will bring. She is still tiny for her age and I dress her "cute", so many people who don't know her think she is younger than her almost 10 years. Eventually, though, she will grow and develop like any other young lady. Then what? We incur enough stares now. Will they increase?
A young man (maybe 15 or so) was at hippotherapy yesterday. At first, I thought he might be the brother of one of the kids riding or a volunteer. When he opened his mouth, however, and spoke more like a five year old, I realized he was disabled.
The well-meaning people at the grocery store and the bank and the myriad other places we frequent don't know Jonalyn is cognitively delayed by looking at her. When they ask her questions about which grade she is in school or how her summer is going, she can't answer and I have to either answer for her explain. We have to order for her in restaurants. More and more we need to tell people about her disabilities. The worse part, what makes me dislike all of this, is the pity we then get. "I'm so sorry." I'm not! I love my daughter!
In the future, the explanations and the stares will increase, I'm sure. We've even seen a couple of adolescent doctors at the children's hospital and don't feel they "get" Jonalyn's special needs.
The next time you meet a parent with a teen/adult child who is disabled, please don't say you're sorry. And it's O.K. to engage the child. I met a high school friend in the store a few months back and her disabled son. I shook the young man's hand and spoke to him. He smiled at me and I enjoyed our repartee. Yesterday at hippotherapy, a precious little girl with Down syndrome sat next to me. I'd guess she's no more than four or five years old. We had a cute conversation, which included her telling me a story about how Elmo went in for surgery. She put a band-aid on him in case he started bleeding. Adorable!! Trust me - if you engage these children at their level, you will be so blessed by them.