xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: "I hate autism"

Saturday, June 19, 2010

"I hate autism"

"I love Scarlett but I hate autism." That's a quote from Xuan “Linda” Peng, who was convicted of killing her 4 year old daughter and was just released from prison after serving 5 years. Apparently she "snapped" and drowned her in the bathtub after a really bad day. I can't imagine losing control like that, but I do know what hating autism feels like.

Yesterday was Child 1's last day of 2nd grade. I went to pick him up and his class was on the yard playing and waiting for parents to come. I was talking to his aide and I looked over and saw him surrounded by a group of girls. They were talking to him and I could see that he had his hand over his mouth which is what he does when he "recites" something. I was too far away to hear what was being said, but I pointed to them and asked the aide "what's going on over there?" She assured me that they were playing and having a good time, "he's okay, don't worry," she said (she's awesome). I joked about how I was so used to seeing him surrounded by a group of kids who wanted to be his friend only to have him turn and run away from them (I've been watching him do that since he was able to run.) But I didn't like the way they were crowded around him, it didn't look right to me. Were they making fun of him? Was he saying "Coming up next on Sprout, the Good Night Show!"? And then all the girls turned around and looked at me, saw me staring at them, as if to say "What? We're not doing anything!" It felt wrong, I wanted to go over there and smack them all. But then the moment was over and the crowd around him dispersed.  He saw me and came over to say hi, and he didn't mention the Good Night Show at all. Then he went back to drawing roads in the mulch around the play structure.

I remember once when Child 1 was about 4, saying to a parent with an older kid on the spectrum, "it's all just cute now, but at what point do the other kids start to figure out that something's not right here? When will the teasing start?" He told me around 3rd grade. I remember thinking how far away that seemed. Maybe by that time he'll have made so much progress that it won't be an issue? That would be awesome, I won't have to worry about it. I think they started to figure it out this year, actually, because I've gotten some comments and questions from the other kids ("Did you drop him on his head when he was a baby? Is that why he's like that?") but I've always held 3rd grade in my mind as the year that everything will change.

Our IEP team is changing next year. We're losing our beloved Speech Therapist as well as the Inclusion Coordinator at the school, and a beloved after school tutor is moving to LA. Lots of changes, lots of uncertainty. I don't know who his teacher will be, I don't know how to prepare him for what he's apparently about to face. 3rd grade scares the shit out of me, and here we are, right up against it. He hasn't made enough progress and his differentness WILL be an issue. He doesn't know what he's in for. I'm not sure I'm ready.


Anonymous said...

Scary indeed. Always. All we can do is keep walking forward, hand-in-hand, praying that the power of our love will reveal the answers - or some of them, at least. (((hugs)))


Anonymous said...

Then again, maybe there's more that we can do; that's just what I do. Every choice comes from love, being in the moment, and forced faith . . . meaning that I just go forward believing that good will come, despite my overwhelming fear. It's all I've got.


jillsmo said...

A wise woman once said "shut up and keep swimming." It's not like we have a choice, though. (((((You, too)))))))

K- floortime lite mama said...

Isnt it scary
want to say something comforting but it really is scary

Lizzie said...

wow. all i can say is jake is lucky to have family like you. it is certainly not easy, but he will make it through. i love you and i love jake!!! let me know what i can do to help. lizzie

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