the look, acceptance and hope

So we’ve looked at a couple houses now. We’ve found one we like a lot, on a one-acre lot just south of Guthrie.

We’ve been taking the kids with us to look at stuff (mostly because we have to, and partly because we like to hear what they think too) and therefore Bede has been getting put in situations where he is expected to behave in certain ways: walk at the side of or very close to an adult, be relatively quiet, wear clothes, don’t touch.

Mostly he does not behave in those ways. He has about 3 to 5 minutes (I am being generous) of relatively compliant behavior before he becomes a puddle of yell on the floor, or a bolt of boy lightning charging for a fence. The houses with actual people still living in them are hard, because he isn’t permitted to examine the belongings of the owners to his satisfaction, nor is he allowed to run amok through the house. However he has kept his clothes on, which is great!

Anyway, he has a a hard time. If I am able to give him my full attention he does okay, even good, but I have 5 other children. Sean and my mother are there as well to tend to the other 5 but they still sometimes need me, so it gets kinda tense. Which is the point of my title: the look.

I think most parents are familiar with the look. You all have kids who behave in ways that others judge as bad in public, and at some point someone has glared at you disapprovingly. I’m used to that look, I’ve gotten it for years (I try never to give it, however.) And I’m pretty okay with it. If my job in life is to give someone else a reason to feel better about themselves, well, so be it. Not my problem.

But when Bede goes farther than a nonautistic child would, then I get the OTHER look.

The pity look.

I hate that look. Sometimes we get it with no introduction, but we usually get it when I say “He’s autistic. This is tough for him.” Then their look goes from anger to “Oh, you poor woman!” laced with “Thank God I’m not you!”

We do not want your pity. We want your understanding.

If you are faced with meeting an autistic child in distress, please don’t look sorry for the parents. You can express sympathy for the child in question, who is having a difficult moment, but please don’t look sorry for the parent. And don’t tell us we’re strong, or that you couldn’t do it, or whatever.

We’re just doing what anyone would do. Parenting our kids.

I guess a lot of this was spiked by the Good Morning America segment on autism acceptance. Diane Sawyer ends it with a bit of untrue treacle: “isn’t it [autism acceptance] a beautiful way of expressing heartbreak?”

No it is not. Acceptance is the other side of heartbreak, Diane. Acceptance is HOPE.

10 thoughts on “the look, acceptance and hope

  1. expressing heartbreak?? excuse my french, but wtf? blech.

    Good luck w/ the house search. You’re projecting calmness about it even though it sounds like a huge undertaking.

  2. You don’t even want to know the looks his hypothetical future spouse will get when he has meltdowns as an adult. One gets used to it, I assure you! Poor Rich, he’s had to deal with this a lot.

  3. what a lovely post. my husband is bi-polar and i think i might know the look you are talking about. the times when i am able to get past the look feel wonderful. kind of a f* you world, you don’t even know what you are missing over there in your tiny little box. keep on keeping on.

  4. Just south of Guthrie?!?!
    Um, that’s a little further from me than I care for. Don’t you realize that you must please ME when you move?

    I really hope all goes the way you want, to serve your family best. Prayers from the Gray family.

    As for the look, I need to blog about my totally cool library experience yesterday.

  5. Yes, what is it with that pity look?! Recently I realized that if I say “cerebral palsy” the pity look is absolutely brutal. However, if I say “birth injuries” it’s much less so.

  6. I so know what you mean. we go to church ith a WONDERFUL group of people now and I haven’t once gotten to “poor you” look. they are helpful and always encouraging… because unlike you, I am terrible at this. I’m SO impatient in general and these sorts of things call for unwavering patience. go figure.

    also I was curious about a previous post… would you not give bede any supplement? I know you give him meletonin….

    I give Eva cod liver oil and Vit B and magnesium…. they help her so much. she’s a happier kid and eats, talks and sleeps better when she’s taking them.

  7. Laura: we tried giving Bede a fish oil supplement and his sensory seeking went off the charts. I don’t know if it was just coincidental but we haven’t reintroduced them. He has some mild self-injurious behaviors that he’s slowly lost and I think it’s too soon to restart anything that might contribute.

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