Day Twenty-Six of Get it Down–Another Question
I was asked a question on one of my posts about DS16 and Down syndrome. I have mulled this over, and I am going to attempt to answer it.
How have you handled the reactions you and your son get from people in public?
Honestly, it has been so long since DS16 was little, and I don’t exactly remember how I handled it then. Which is kinda weird. We got all kinds of odd looks between DS16’s inability to crawl and the way he would commando crawl across the beach sand, to the walker he used to get around until he finally mastered walking at age three. I think because I had two busy kids so close in age, I was blissfully ignorant of many of the glances that came my way. I was just trying to survive as a mother!
But I know that can be one of the difficult adjustments as a new parent. In fact, I was asked this question in person recently by someone whose son is less than two. It was a dad who admitted, “We still just aren’t used to the stares, and we never know what to make of it.”
First, I assume positive intent. Sometimes I am sure that is wishful thinking. But hey–our kids are cute! And often the stares I have received end up followed by someone shyly approaching me to say, “I have a nephew…” or “My neighbor…” There’s often a connection and a fondness in the look.
Other times, however, the look is because DS16 is doing something odd. Maybe he has food on his face because his sense of touch is less developed than most people, so he has no idea that the mustard from his hotdog has planted itself on his upper lip. Or maybe he is feeling self-conscious about something (say the mustard on his lip), so he acts silly to try to cover up the embarrassment. And frankly, that happens a fair amount. And when it does, well, it embarrasses me, to be honest.
So let me back up. One of my goals from early on with DS16 was to help him fit in with “normal” society. To keep him from standing out in a crowd. I was appalled at the atrocious glasses that were offered when he was a baby and needed vision correction. They positively screamed “DIFFERENT!” I went out of my way to dress him like a regular kid in whatever clothes were in style, even when we probably should have been spending our money on more responsible things. I worked–HARD–on correcting behaviors that made him stand out. When he tongue thrusted, I pushed his tongue gently back into his mouth to remind him to control it as much as he had the ability. When he began grinding his teeth as a toddler, I would put gentle pressure on his cheeks to loose the “grip” and remind him, “No grind.” When he gnashes his teeth, even today, I remind him, “Stop chomping.” It annoys the heck out of him. But those are things that make people do a double take and notice DS16 for his differences, and I want them to notice DS16 for his strengths and to value him as a person, just as they would with anyone else!
If anything, nowadays the stares or odd looks make me that much more determined to have DS16 seen doing normal activities that people do. Shopping at the mall, cheering at a ball game, going on a youth retreat, holding down a job. People look at him and may think they are seeing someone who is radically different than they are, but in fact the thing I want them to see is how similar he really is!
The funny thing is, we have been in our community for almost six years. People here know DS16. Unless we are out of town, odds are that anywhere we go, someone knows DS16. So if there is any staring, the person looking notices that DS16 is loved and accepted. Because believe me, if an acquaintance sees DS16, they are bound to holler out a greeting! It is a given that you will be greeted with a smile, a handshake, and a hug from DS16–he is always happy to see a familiar face!
And just like in the old days, now that I have five kids, I am usually so darned busy just trying to keep them in line, I don’t notice the looks so much.