Tuesday, June 2, 2009

Jonah's Inner Life

An essay I wrote on misperceptions of autism was published today on Babble. Here's the link: http://www.babble.com/Getting-Real-About-Autism-Its-not-a-discipline-problem-or-a-diversity-issue-its-a-disability/

Working on that piece, I spent a lot of time thinking about why it's so difficult to parent a child with autism. There are many obvious reasons in my case - the tantrums, the aggression, the self-injurious behaviors, the constant elopement. But I think an even greater barrier is my total exclusion from Jonah's inner life. That is, I don't really know whether or not I know Jonah that well. Maybe I do - maybe he really only thinks about water parks, and ketchup-and-french-fries, and Sesame Street videos. But maybe there's more to him than that. There are several documented cases of severely autistic individuals who - although completely non-verbal - wrote essays or poetry once they were given communication devices. Which has made me wonder: is there any poetry in Jonah?

I don't think so - not poetry, at any rate. Jonah can write, and spends a great deal of time with markers and chalk, and has never felt inclined to write much more than titles or characters from his favorite videos. Still, there have been moments. One afternoon he wrote in chalk on the driveway: EACH DAY I LIKE IT BETTER. I still don't know where that came from. Could that possibly be a quote from a Sesame Street video? I really thought I knew each and every DVD backwards and forwards, and that phrase didn't sound at all familiar. Was it an original thought? If so, what did it mean? Each day he likes what better? I was so moved by the potential implications of that one phrase I took a picture:

I'm sure it's because I'm a writer, but I can't help seeing symbolism in everything. Jonah loves to tell me, and his teachers, and his aides, exactly what to draw, and he goes through spells in which he asks for the same pictures over and over again. Usually, they're Sesame Street characters, or images or animals from Sesame Street videos, but several times he's asked me to draw a series of purple doors with hands on them. In each picture, someone different wants to open the door: Ernie and Elmo, an umbrella with ten drops of rain, Hilary, Kaitlin (one of his favorite therapists from Kennedy Krieger). And whenever I draw these pictures I think, is there anything more saturated with symbolism than a door? Is the door a metaphor for the separation between Jonah and the rest of the world? What's on the other side of the door? Why does Ernie want to open it so badly?

And then I decide that I am probably imposing all this meaning on the picture myself. Probably.

There are other clues to what Jonah's thought process must be like. When I let him, he'll play his favorite song, "The Macarena," on my I-phone while also running a movie on his DVD player and playing another song on the CD player. And while all three going at once sounds like a mess to me, I suspect it doesn't to him. Is it possible Jonah's mind is crowded with thoughts, twisted together into something too complex for his limited conversational skills to articulate?

I know Jonah's teacher is working hard to develop Jonah's use of language, and I'm anxiously awaiting to see what might come of it. My dreams for Jonah have diminished in scope so much since his birth: from Nobel laureate, to college graduate, to Wawa stocker, to our present dream that we can just keep him from hurting himself or someone else. It would give me a lot of hope, maybe even invigorate some of those old dreams, to be able to ask Jonah, What are you thinking? and have him be able to answer me.


Off the Beaten Mommy Track said...

Thanks for sharing this. I love the way you write so simply but with truth and a lot of heart. Cheers.

meredith said...

Amy, a fantastic essay as always. Love your writing.

yukapuk said...

Amy, Everytime you write about Jonah it touches a piece of my heart. One reason is because Jonah has a special place there, but the other is because when you write it comes from deep within you and is put together so beautifully that it takes my breathe away!


Kaitlin said...

i have some great pages of jonah's word art that i've kept as mementos. i, too, was always fascinated by the cryptic messages that didn't seem to relate to sesame street.

give him a big squeeze from me!