Thank the sweet Lord and Butter that I finally found someone to fill in for me so that I can listen to John C. Mayer all day long return to my magic closet of diamonds and free whore pants. Or really just catch up on everything that I’ve allowed to slip since I’ve been living at the doctor’s office all week.
Also: Band Back Together is making me pee myself with it’s awesomeness.
If I owe you something, I’m sorry. I’ll get to it as soon as I can.
If you behave like I owe you something: I’m not your bitch.
So thanks, Stark. Raving. Mad. Mommy. Now I can spend my day doodling Aunt Becky hearts John C. Mayer in big puffy pink hearts. Er…blinging out my toilet.
It should be clear, up front, that I don’t speak for the autism community as a whole. I only know our experience, and I only speak for myself. My son is verbal, so he speaks for himself. However, most of what he has to say revolves around Lego Star Wars, so if you want to know more about that, we’re all set.
I recently had a conversation with my four children about what they want to be when they grow up. The Peanut Butter Kid, who is six, announced that when she grows up, she wants to be a female boxer, or a doctor, or possibly both. That’s an excellent career choice because if you keep beating people up, you never run out of patients to treat. It’s genius, really. Cookie, one of my nine-year-old twins, wants to be a mom, and a teacher, and volunteer at an animal shelter if she has time. Little Dude wants to be a firefighter. I love that he is just like every other four-year-old boy sometimes. But then he started explaining, in great detail, what he loves about fire trucks, and how the ladders work, and then I remembered all the ways he is not like other four-year-old boys.
When the Pork Lo Maniac (my other nine-year-old) grows up, she plans to be a famous scientist who wears a squeaky motorcycle jacket and owns many pets. She doesn’t want to ride a motorcycle, she just likes the jackets. And she thinks that jackets that make squeaky sounds are the coolest fashion items ever. She thinks she may invent a motorcycle with some safety improvements, like seatbelts and walls. I asked if that was actually a car, but she said it will be much cooler than a car. Obviously. I think what she really wants is to be driven around in a Popemobile with throngs of adoring fans thanking her for her scientific achievements with offerings of pork lo mein.
I’ve been hanging out a lot with the Peanut Butter Kid, who’s on homebound schooling with some tummy troubles. The other day, she commented that if the Pork Lo Maniac grows up to be a scientist, she can invent a cure for Asperger Syndrome. It was a beautiful thought. She cares about her brother, and sees that he struggles with many things. Also, she whole-heartedly believes that her older sister can do anything.
I told her that I wasn’t sure if I would “cure” Little Dude, even if I could. Sure, some things would be easier for him (and, let’s face it, for me), but then he probably wouldn’t be so freaking awesome at Lego Star Wars. And maybe he wouldn’t be doing multiplication at age four. Maybe when Little Dude is grown up, his Lego Star Wars and math abilities will converge into engineering skills that will make a difference in the world. I wouldn’t take away his Asperger if it meant taking away all great things about him, too.
“We love him the way he is,” I said. This has become my mantra. I say it to his teachers, I say it to his sisters, I say it to strangers. “We don’t want to change who he is, we just want to help him not be quite so stressed out by the world around him.”
It’s true. Our daughters all have varying degrees of anxiety, and we don’t want to change who they are, either. They are also empathetic and sensitive and kind. We just need them to be able to get through the day. So we work on coping strategies.
The PBK’s thought weighed on my mind for days afterward, though. Little Dude’s Asperger isn’t as severe as that of many Aspies. His struggles are also much less than those of people with more severe or more classical forms of autism. Little Dude has always been verbal. It’s just different. So I think it’s probably easier for me to say I wouldn’t cure him if I could.
I see Facebook status posts sometimes that say things along the lines of “people with autism aren’t looking for a cure, they’re looking for acceptance.” I get that. All people deserve to feel accepted for who they are. However, I have a feeling that there’s probably scores of parents with young children on the spectrum — nonverbal kids that seem closed off from the world — who are thinking I would cure it if I could.
I find it a little disturbing that there’s all this pressure to welcome autism with open arms. Of course you love your child. Of course you wouldn’t trade him in for anything. But I think it needs to be okay to admit that you wish your child didn’t have to struggle. I think it needs to be okay for people with autism spectrum disorders to say, “I’m totally cool with who I am, but sometimes it sucks monkey balls to have to work this hard all. the. time. to deal with neurotypical world.”
Example: Little Dude has a motor planning deficit. He needs to be taught things explicitly that seem to be intuitive to other kids. When his preschool teacher says to line up to go to the library, he lines up. And then stands there because he doesn’t know that the next thing to do is walk forward. When the kid behind him yells “Go!” and gives him a shove, it hurts him deeply. And it stabs me in the heart. And makes me want to punch the other kid in the throat, which is totally inappropriate, I know.
If I were June Cleaver, I would be more chipper about our whole situation, I’m sure. I’d be all, “Gee, Ward, don’t you think you were a little hard on the Beav tonight? You know, he’s been in ABA Therapy all day. And we’re still working on getting his medication right.”
And then I would smile and fetch Ward a martini. And then I would go in the kitchen and knock back a Valium with a gin chaser. Or maybe that’s Mad Men I’m thinking of.
Ultimately, it doesn’t matter whether I would cure it if I could. I can’t.
For now, I know that Little Dude is at his happiest when I am at my most accepting. I do accept him, with open arms and all my heart. There are things about his Asperger that are both awesome and hilarious. Like when he observes that an old guy at Target looks just like Emperor Palpatine.
But I wish some things weren’t so hard.