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A Small Request

Monday, 21 February 2011

Photo courtesy of iStockphoto

Swiss Cheese. I never cared for it. The taste was too pungent; the texture too unpredictable.

And yet, it is the perfect metaphor for Asperger’s Disorder.

Living with a child who has Asperger’s means living with a penetrating, inconsistent force. My son can seem even-tempered and then swoosh! Right down that hole he goes. {Never saw that coming, I think to myself.}

I know that people mean well when they say one of the following things:

  • I think you must be blowing his deficits out-of-proportion
  • He has such lovely manners
  • But he seems so…normal

And, in fact, Beernut does have many moments of normalcy throughout the day. But they are inconsistent. And they are moments. They don’t last.

The folks who say any one of the aforementioned statements have absolutely no idea what it is like to live with Asperger’s. It is the last thing I think of before I go to sleep and is the first thing I think of when I awake. Of course, it’s entirely possible that is due to the fact that Beernut wakes me out of a deep sleep at some unGodly hour each morning…

We walk on eggshells, never knowing what is going to make him come unhinged. His clothes might be the culprit. Or what I’ve served for a meal. Or a name that someone called him at recess. And my heart skips a beat (and not in the lovey-dovey, good way) whenever I see that the school is calling in the middle of a school day.

So please, don’t tell me how normal you think my kid is. Because, really, you have no idea.

And you should thank God for that.

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6 Comments leave one →
  1. Tuesday, 22 February 2011 2:02 am

    I suppose that people mean well when they say this but I can imagine how awful this must be for you. Deep problems are indeed the last thought in the evening and the first in the morning.

    • Frume Sarah permalink*
      Thursday, 24 February 2011 10:25 pm

      And it’s so hard on Beernut as well. One of the distinguishing differences between autism and Asperger’s (which is sometimes known as high-functioning autism) is that our kiddos are fully aware that they are different. Just today, in the midst of a meltdown, Beernut pleaded to be normal for just one day. That’s all he wants.

      {{sigh}}

  2. osita permalink
    Tuesday, 22 February 2011 6:30 am

    Would it be better for people to tell you how disfunctional they think he is??

    I can see why it’s hard, but surely they’re just trying to make reassuring chit-chat?

  3. Tuesday, 22 February 2011 10:52 am

    When unsure what to say, I find it best to say nothing at all. I believe it’s insensitive and rude. Unless someone asks for my opinion, I don’t get to arbitrarily offer it. How frustrating this kind of thing must be for you. {{{{hug}}}}

    • Frume Sarah permalink*
      Thursday, 24 February 2011 10:28 pm

      Amen.

      (and thanks for the hug.)

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