To tell or not to tell

I have written before about the attention we receive when we are out with Wil. Sometimes positive, sometimes not. The attention comes in the form of looks as well as words. When Wil was a baby the looks were uncertainty. I think strangers were looking at him the same way the medical staff (and James and  I) did during his first few days of his life, when we were awaiting his karyotype. Does he or doesn't he? Literally, moment by moment he looked different to us. One nurse would say, "yes, I definitely see it." Then the shift would change and the next nurse would say, "no, I just think he has your low ears and due to his prematurity he is a little puffy around the eyes." I felt the same way. He looked so perfect. He couldn't possibly have Down syndrome, I thought. Or does he? There is something. A quality that I cannot point to or articulate. So I just kept looking at him. Looking for "the look." Of course, soon enough it was answered for me.

When Wil was a baby I usually wore him in a wrap, or he was in his carrier, or hidden behind the canopy of his stroller while sleeping. I kept him pretty close. I wanted to protect him from the "does he or doesn't he" looks of the public, and truth be told, protect myself. I wasn't yet sure what my responsibility was regarding Wil and the public eye, if any.

Now, Wil is 3-1/2 and I cannot tuck him away in order to avoid the looks. I don't want to. I am proud as a peacock of my boy. The looks of others are not as uncertain anymore. Wil wears his diagnosis on his face. As he has matured so have his features. But now, I don't see "it." I think of my cousin who is married to this great woman from South Africa. He once told me that he does not hear her accent anymore, he just hears her. That's how it is for me with Wil, I just see him, not his diagnosis. But others? They definitely see it. And they look and wonder. Sometimes they ask about him and sometimes they don't. I still struggle with my role as Wil's mom and advocate when confronted with looks or questions. I want to tell anyone interested about Wil, Down syndrome, how great he is and how much we love him. Also, I don't want Wil to be primarily defined by Down syndrome.

And so, when we are out and I get the inevitable question about Wil and Timothy's age difference or Wil's glasses (this seems to be a comfortable launching point into further questions for a lot of people) or Wil's unusual gait, I ask myself the same question. To tell or not to tell? Do I just answer the question or do I offer more regarding his diagnosis? Every day, with every question, my response is different. As Wil gets older I will let him take the lead on this. He is already starting to. Much of these public conversations take place after Wil has reached over to a stranger and said, "Hi!" is his sweet voice. Sometimes I think he senses the people who need a special encounter!

GetItDown;31for21

3 comments:

Kristen Triplett said...

Stacy, thanks for the comment! In a few months we will hopefully have furniture in the guest room, so if you and the boys need a little beach vacation you are always welcome here! I am looking forward to reading your blog posts everyday this month.

P.S. I saw an interesting article on down syndrome the other day on cnn.com: http://www.cnn.com/2008/HEALTH/conditions/09/30/adult.down.syndrome/index.html?iref=newssearch

Anonymous said...

I think it's important to remember that everybody who is giving you and your son those looks has their own reasons/baggage.
I am a special ed teacher, and sometimes just the sound of a child's scream will remind me of a kid I worked with a few years ago. Or a speech pattern will mimic one of a child who I struggled to help all day. Maybe the person behind you on line at the supermarket has a son with down syndrome,and they want your son to be like theirs.
Some of us might stare, but we might be staring with love.

waldenhouse said...

Thank you, anonymous. I do realize that. I have had some very sweet encounters when out with Wil. The one that immediately comes to mind was with a woman at Five Guys restaurant. I knew she was staring, but I could also tell she was staring with some sort of knowledge. We later talked and she was a special ed teacher in our school district.

I also know that some of the looks are not looks of love. I experience those with some regularity from neighbors who are very uncomfortable around Wil. Yes, I am sure they have baggage of some sort. But it still hurts knowing that they (and their children) don't want to associate with Wil.

Thanks for stopping by, I really appreciate your insight

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