Wednesday, April 7, 2010

looking, staring, observing, noticing, mocking...

So, here we were in our local 'super' store the other day, Mas pushing the shopping cart and me behind him, trying to keep his arms on the cart and off of people's coats, hands, etc., when I hear my daughter say, "Just 'cause we don't know what's wrong with him doesn't mean you have to stare at him."  ??  What?  Apparently some kids were staring at him as we were walking, and since she was behind me, (and I was otherwise occupied) I didn't realize what she was seeing.  It took me a moment to even register what she had said, and since the kids were her age, I was even more surprised that she took that stance.  

She said they had been staring at him all the way down the aisle.  How did I not notice this?  I assume it was for a couple of reasons...first of all, I was busy.  Keeping "Mr. Social" from spreading his 'socialness' on everyone is a full time job in the stores anymore.  Secondly, I think I have just gotten to the point where I mostly tune it out....'mostly', I say.  (More on that later.)

It broke my heart that she would have to see that, but also warmed my heart that she was willing to stand up for him.  I often wonder how this experience is shaping her.  While the approach she used wasn't the greatest, I am glad she understands that we need to be his armor for events like that.  I guess I'm so used to being with him that I sometimes forget how he must look to others.  Drooling, flapping his hands and arms, touching people, sucking on his fingers, walking around with a bib and a speech device hanging around his waist, odd gait, etc.  It just gets to be our 'new normal', I guess, and I don't even think of it.

It used to really irritate me when people would stare.  Now, I find myself staring at kids all the time...I look for low-set ears, small head circumference, small lower jaw, hand defects, gaze abnormalities; you name it, I am looking for it.  I especially find that kids seem to really stare at him...I'm sure they wonder about the speech device, first, and then they are busy trying to categorize him, I think.  Adults staring doesn't really phase me anymore, because I assume they either work with him at his school or he reminds them of someone else they know...or, they are also trying to categorize him.

That being said, we had a unique experience the other day while we were driving home from a local town about an hour away.  A carload of teenagers was in the left lane beside us and they started making fun of Mas, and mocking him by clapping like he was and beating on the window.  Once my daughter pointed it out to me, I looked over, and sure enough, there was a carload of kids, mocking my son.  Well, let's just say I sprung into action....following them for the next 3 miles at a fairly close range while glaring at them as they looked nervously out the back window.  It was all I could do not to just explode.  

I was flooded with emotions, the obvious ones, of course, like "How dare they?" and "The nerve....", but also, with thoughts like, "What does Riley think of this life we have?"  It is frustrating to deal with this type of thing, and I suppose it is just going to happen more and more often, as he grows up and acts less and less "his age."  It would be great to have a diagnosis for moments like this, so we could say, "He has ______."  But, we do not.  That leaves us with a short moment of time to say or do something.  I guess this is what we have to deal with, so we 'just deal,' and since it's all Riley has basically ever known as his big sister, it's probably a very normal position for her to be in.  

In sharing these experiences, I must admit that the vast majority of people are kind, thoughtful, sincere, and sweet when approaching us or when passing by.  People really are mostly good, when it comes down to it.  It's how you react to those that aren't so good that defines who you are as a person.  I'm sure we are all growing as a family in that regard.  I hope that Mas is mostly unaware of the staring and the occasional comments...it would break my heart to know otherwise.

In Idol news, this week seemed much better to me; probably because like most of America, I love the Beatles.  We had pegged Tim or Andrew to go home tonight, so we were surprised to see Michael Lynche up there.  They had to save him, though; he is five times the singer that Tim, Andrew, or Aaron is, and they knew it.  

In other news, we have spent the past two weeks battling sicknesses; everything from bronchitis to bladder infections to sinus infections to colds.  ARGH.  We are ready for a break from it all!  The last two in the family started on antibiotics today, so now we are all either on antibiotics or just finished.  I guess it is the season for such things.

In closing tonight, remember that we are all one accident or illness away from those we see around us who are less than perfect.  We could all be there one day, some of us sooner rather than later.  Let's try to remember that we really are all people, first, and everything else must come second.  Look if you must, (I must, at times!) but try to flash a smile or give a nod or a wink...that mom or dad or sister might be in need of a little love as they help out their special needs person.


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