The Public Eye
5/10/2008
Before Wil came along we could run our errands, go to the park, do our shopping without anyone glancing our way. At least as far as I could tell. There were the times during the months after Luke was born, when I was wildly fatiqued, that I left the house with my shirt unevenly buttoned (like, really unevenly buttoned!), or with spit-up all over my shoulder and down my back, or wearing two different flip-flops. . . I am sure I must have received some looks. But those would have been intended for me.
Now, when we are in public? We get looks. All the time. I see them, I feel them, I usually ignore them. Sometimes I comment but mostly I ignore. Sometimes, though, we don't get looks only, we get comments too.
A few days ago James and I took the boys to Five Guys. First, if you haven't been there you must find one and go. In my book they have the best burgers around, hands down! It will be worth every penny you spend on gas to get there. Because when you bite into their burger a peace and calm like no other will come over you, I promise. It happens to me every time. And then, one of my kids scream and the peace is over. Anyway, we like Five Guys. One of the reasons we like them is because they (at least the franchise we frequent) are regular supporters of the Special Olympics and have some great pics of kids with Down syndrome on their wall. And the burgers. Love the burgers. The fries aren't bad either. Anyway, on our last visit a woman was eating with her teenage daughter at a table near us. I was watching her watch us. Well, watch Wil. She kept looking at him, talking to her daughter, looking at him some more, talking some more. I sensed that she was looking at him admirably but I couldn't be sure until she leaned over and said, "Can I take that one home with me?" I smiled and said no way but offered her Timothy. I'm kidding, I'm kidding! Timothy was just being particularly vocal about wanting to get down and cruise the restaurant so I was ready for someone to take him so I could concentrate on my burger. I decided I couldn't live without Timothy either so Luke took him outside for a walk. This woman went on to tell me how she works with kids with special needs, how much she adores her kids with Down syndrome, how precious Wil is and how fortunate we are.
We have had other encounters like this. In my experience it is often the case that the people who inquire about Wil or make positive comments, like the Five Guys lady, are people who know first hand the joys of having kids with Down syndrome in their lives and they just cannot resist an encounter with Wil. He rarely disappoints and gives them a smile, giggle and wave.
Then there are the people who watch Wil, watch me, and are perplexed. I can see it in their face. They either can't make out his diagnosis or they are surprised by how "normal" we seem or something. I don't really know what they are thinking most of the time. But sometimes I get a sampling. Earlier in the spring I took all three boys to our neighborhood park. I don't do this alone very often because, well, it's crazy. Luke is fine. Wil and Timothy, on the other hand, are at the age where they want to climb, climb, climb and have absolutely no fear. They also seem magnetically drawn to the street and can get there in a matter of seconds. And of course they go in opposite directions. But I took them. It was one of our first pretty spring days, we had on shorts, the park seemed the thing to do. There was another mom there with her son, probably Timothy's age. He was wanting to climb all over everything and mom was super cautious with him. There was another woman there - I wasn't sure why she was there or who she was with. And then there was a dad with his baby, they were swinging. As I expected Wil and Timothy were all over the place. I would yank them by one arm to pull them onto or off of the play set as I reached for the other. They were going head first down the slide and tumbling to the ground. I let them. Wil, who is not walking much, was doing his bear walk everywhere. And he is fast. I noticed the other adults watching. I figured they were alarmed by how rough I was with the little guys and remembered how careful I once was with Luke. And then the woman who was seemingly alone asked me Wil's age. He is three I tell her and keep playing with the boys. "And he doesn't walk?" she said with an edge of irritation in her voice. I tell her he is learning and explain the delay. She chuckles and tells me that the way he is getting around looks odd and then turns to talk with the other mom who was standing next to her. We stayed another five minutes and then packed up and left.
The difference between these two women is striking. Most of my experience, however, is somewhere in the middle - quiet looks and occasional smiles. But when I was walking the boys home from the park that day I had a knot in my gut. It was there because I know that as Wil ages we will likely be receiving more comments of that nature. It was there because I know that soon Wil is going to pick up on it. It was there because I know that Luke will soon begin to hear such comments from friends as he moves through school. It was there because none of those parents were interested in engaging with us in the way they were engaging with each other simply because they didn't understand Wil.
I have said it before. I feel sorry for people like the one at the park. One, they have no idea how hurtful their words are but more than that they are missing out on something that the lady at Five Guys gets; the unspeakable joy and the invaluable lessons that come from being in relationship with someone that has Down syndrome. Wil is not going to impact everyone that crosses his path but I know from what we have already experienced he will impact many. What a privilege it is to be his mom.
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5 comments:
I've been slacking on commenting so this is a bit late but just wanted to say how much I appreciated this post. I hope I have such patience when/if the comments come.
Thanks for your comments, you are giving us a needed education. It's still so sad that people don't understand (or at least try and be polite) but I guess they just are uncomfortable and uneducated.
Tom - thanks. I'm not sure if I was patient that day on the playground or just speechless. The woman was clearly bothered by Wil which left me at a loss for words. I appreciate you stopping by!
Lark - yes, it is unfortunate that other's don't "get it." We are learning that dealing with those folks has become as much a part of our lives as the adjustments to Wil's needs. The latter is just much easier!
Hey there - I'm working on updating my site - but am taking a break - it takes me an eternity to upload pictures! :)
I worked with adults with down syndrome one summer - I treasure the memories of that summer. The place I worked (in Germany) hid handicapped children from Hitler's men during WW2. When I took a group of them to the park or grocery store it felt at times as though attitudes etc. had not changed a whole lot in some ways. I knew the looks we got when we were out and about - and I knew the people had NO IDEA what they were missing out on - how loving and HILARIOUS and precious people like Klaus and Fritz were. Even their parents neglected them - during the whole summer I was there I saw one parent come and visit.
Will is a blessed little boy indeed - and so are his Mamma, Dad and brothers!! :)
Stacey - I hope you can still swing into the beautiful mountains here - is it next weekend? Doug and I would LOVE to spend some time with any or all of you! Is Wil's procedure scheduled yet? Write me at rendat222@gmail.com. Sorry I've not been in touch earlier,appreciate your blog postings! Love, Renda
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