Wednesday, March 16, 2011

Losing Our Marbles

The other night, Olivia announced rather matter-of-factly that a couple of children she'd been hanging out with the previous day did not like Simon. For a moment, I think I stopped breathing. I was startled by the candid cruelty of the statement, and I had about 20 different thoughts at the same time.


"Who wouldn't like Simon?"

"Did I hear that right?"

"What did Olivia say to them?"


"Were they mean to him?"


"Did he do something gross, or provoke another child?"

"OMG, how do I handle this one?"

After a long moment of silence, I told Olivia that the statement wasn't nice. She immediately sobered and looked away as she does when she's upset, or embarrassed. I asked her why she had said what she did, and if the kids had said something about Simon or to Simon -- if so, what? And how had she handled it?

After some prodding (she was worried she was in trouble and was reluctant to share), she told me that the kids had NOT actually said anything, she had assumed they didn't like Simon because they didn't play with him or talk to him, and because he sometimes took toys away from them and put them in his mouth. She also remarked that he drooled a lot, and she was worried the other kids thought that was gross.

Oh, dear. And wow. And crap, what is the best way to handle this?

I have no idea if I handled the situation properly (I must have lost the handbook), but this is what I did: First, I told Livy that, because she had said something very hurtful about Simon which was based on assumption rather than fact, she was going to lose some marbles.  [We're on a token system for rewards and discipline with Livy -- when she does something good (chores, being kind, doing well on a test) she gains marbles from the out jar to the in jar. When she does something not good (teasing her brother, forgetting to feed the cat, rolling her eyes at us) they go from in to out. When she gets all the marbles from the out jar into the in jar, she gets a reward of her choosing -- right now she is working towards a video game party with a few friends.] I also told Olivia that the best way she could earn them back was by being kinder to Simon.

Over night I had time to think more, and Brian and I talked. Simon doesn't notice when other children choose not to play with him, because he doesn't understand how reciprocal play works yet and he's happy to simply play near other kids. He doesn't get sharing (he knows it exists, but not why you might want to do it to make friends). He doesn't notice when people stare at him, or are dismayed by his drooling or diapers. Simon is just happy being himself, doing his own thing. I admire this about him, and try to keep it close to my heart, especially when I worry about his reception in the world. He is himself, in the present, and that is enough.

But Olivia sees and understands everything, more than most children her age. She especially seems to cue into the non-verbal signals people relay, and is very sensitive to them. She worries and is nervous both for Simon, and herself. She loves him, accepts him, and is a great big sister; but she's also a self-conscious second grader worried about being accepted herself, making friends, and wondering what other people are thinking about her and her family. She sees that Simon isn't fully accepted, and she doesn't know what to do about it, or what it may  mean for her. I know she would step in if someone were actively mistreating him (I've seen her do it), but this more ambiguous stuff she's not sure how to handle, and it upsets her.

What a tough thing for a little kid to try to figure out on her own.

So the next morning, we had breakfast as a family and talked. At first Olivia was quiet as Brian and I explained in more detail about the differences Simon has, and the challenges he faces. We told her that we worry, too. We love Simon and want everyone to see how great he is, but sometimes, we know people don't see it on their own. We told her that, just as Simon is special, we are special as a family. We have the ability to make other people see that individuals with differences are awesome -- and, just like anyone else, they deserve respect, kindness and love. We told her we know that, as Simon's sister, when it's just her and other kids without grown-ups, it can be harder to explain. We let her know that we appreciated how tough it can be, and love her for being so strong, so loving, and so amazing.

Then the floodgates opened. Olivia cried and cried and told us how worried she has been about Simon. That she doesn't like how many doctor's appointments he has, and how much therapy he needs, and that he had seizures and had to go to the hospital and be hurt. She worries about him not getting to play like other kids and have fun. She wishes he could just be a normal kid.

Oh, how my heart hurt. Still does. I held her and told her I, too wish Simon didn't have so many challenges. That I hoped in the future Simon would overcome them, but in the meantime, we all needed to understand that Simon IS a "normal kid." He's just his own kind of normal, and that is okay.

Then, with his uncannily perfect comedic timing, Simon crawled into the living room, cymbals in each hand, yelling "CRASH" as each pounded the hardwood floor and laughed like a maniac.

Olivia laughed, too. So did I. I turned to her and said; "Does he LOOK like a kid that isn't having fun?"

"NO!," she laughed. (Simon let out another crash and squeal).

"See," I said, "We're totally normal."

And at the moment, everything was.

Until later that afternoon, when I stopped in the book section at Target. I knew that Holly Robinson Pete had written a book about her Autistic son from the perspective of his sister ("My Brother Charlie"), and I thought maybe I'd find it there for Olivia. I did, and decided to read through it before buying it. Halfway through the picture book, as I read the wishes of the little girl for her brother -- which so closely mirrored Olivia's -- I realized I had tears running down my face. At which point, a mom of a child Olivia is friends with briskly walked past me. She'd seen me and kept going, crazy woman that I was in tears over a children's book in the middle of Target (we later caught up and had a lovely chat about me being a crazy woman in the middle of Target).

My God, I thought, I really have lost MY marbles this time... and just like that I was laughing to think of cymbals on hardwood floors, marbles in jars, and my sappy, silly, brave and crazy family. No, we're not normal. Not at all. Hell, we put the "special" in special needs some days, and I swear we are better people for it.

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