Out To Lunch
I buckle my brother’s seatbelt, lock the door, and then look him directly in the eye as I announce the rules for the day, “Joshie, listen to Jenny today.” He repeats “Listen to Jenny today,” already more interested in the contents of my glove box than the words coming out of my mouth. Echolalia. Good enough.
By the time I have made it around the truck to the driver’s side, Josh has unfastened his seatbelt and is attempting to fit his body into the small space between the back window and our bench seat. Stuck and squealing, he bats at my head in an attempt to request help. Though I feel like one of the worn-out, bathrobe-and-curler-wearing mothers that you see dragging their screaming children through the supermarket, I do nothing. I say nothing. I do not even look at my brother. I have been trained by so many of my brother’s behavior therapists that this is second nature to me. At the ripe old age of sixteen years.
Finally, my brother stops swinging at my face to say, “Help, please!”
“Good words, Josh!” I exclaim with too much enthusiasm for even a game show host’s taste. Unfortunately, for my ego and for those around me subject to our little production, this is the only tone of voice that my brother responds to. I lift Josh out from the crack he has trapped himself in, sit him down yet again, and say, more sternly this time, “Josh if you do not listen, NO FRENCH FRIES.”
Josh gets this message, loud and clear. Suddenly, he is fully capable of buckling his own seatbelt and sitting calmly. Wonderful. Driving along Pacific Coast Highway, we are blasting the Pirates of the Caribbean soundtrack, which keeps Josh still and so is just fine with me. Prepping Josh for our first pit stop, I turn off the music and basically sing out, “Okay! We are going to the store first and then…FRENCH FRIES!” I sound ridiculous.
“FRENCH FRIES!!” He cheers back and begins to suck on the collar of his shirt. The teachers at his school have trained him to suck on his t-shirts rather than bite himself when he gets this excited. It makes for a very short-lived wardrobe but, at the very least, he is not wiping his bleeding arm all over my car.
We park. I take a deep breath as we walk toward Bed Bath & Beyond. It has been a mere ten seconds after entering the store when Josh spots the escalators. Great. I think and actually say out loud. For the next ten minutes I sit and wait at the bottom of the escalator. Josh nearly knocks over a family as he proceeds up, then down, then up, then down the magical moving stairs.
“Okay…all done, Joshie.” The way I say this is more like a plea than a statement. I make a huge, shameless smile at the older man furrowing his brow, first at me then at my brother then back at me. He turns and whispers something to his equally disapproving wife. Jerk. Angry, impatient, and embarrassed, my thoughts wander to what my friends might be doing at this very moment. Probably not babysitting their autistic brother. Getting ready to go to a party? At the mall? My attention has been off of my brother’s vertical travels for all of 15 seconds when I look back up the escalator, expecting Josh’s descent.
He is not on the escalator.
I jump to my feet and sprint up. After calling his name through the scented candle section with no success, I ask an employee if she has seen him.
“No, honey. I will page him on the loudspeaker and tell him to go straight to the registers though.” I smile politely and frantically state that, “He won’t understand you. He’s Autistic and he won’t even know you’re talking to him. I need someone to block the front doors so he won’t go out into the parking lot…please.” “Ohh, Autistic!?” She actually seems excited. “You know, my neighbor’s son has that. They’re…retarded, right?” I cringe as I struggle with my desire to poke her in the eye with an aromatic table candle, “Can you just have someone block the doors…please?”
Dashing from kitchenware to linens, sweating and fuming over how much I despise canopy beds, I almost run right past my brother sitting completely still, staring in awe at the life-size Sponge Bob Squarepants doll before him. “JOSHUA!” I exhale and realize I have nothing more to say to him—any attempt at a lecture would be futile and I’m exhausted.
Neglecting the hamper we had gone there to purchase, I drag Josh outside. I am sweating bullets and Josh is resisting while scripting some scene from Sponge Bob at the top of his lungs. “French Fries. Let’s go get French Fries, Josh.”
Deflated and still sweaty, I walk my brother over to the restaurant across the lot. I do not cringe when Josh plops down next to the well-to-do woman with the shrimp pasta plate and the horrified look on her face. I am too tired to be embarrassed, too tired to care.
As I force a smile, I try to think up a lecture to explain and apologize for the situation…
I’m sorry. This is my brother, Joshua. He has Autism. He has to check everything in a new room before he can relax…he really can’t understand why you might have a problem with him sampling your noodles—he really, really likes noodles….Oh yeah, he won’t stop if I tell him “No.”
The woman is glaring at me and starts to make squirrel-like scoffing noises, as if to say, What is wrong with this boy? Why can’t you control him?
I am suddenly enraged that I have gone so far as to prepare a calm lecture for a woman that looks at my brother with such disgust and contempt. I don’t feel like giving her an explanation anymore. I don’t feel like being my brother’s therapist anymore. Now I just feel like being a teenager and raising my eyebrow at her as I take my brother by the hand and walk him to the line. We order our dang french fries. I ask for our order to go and we are on our way, leaving behind bewildered looks and napkins strewn about.
Back in the car and feeling bitter, I look over at my little brother—he seems unstirred by all of this and happily sucks on a packet of ketchup. I am suddenly disappointed in myself for caring about what other people might think about him. About me with him. Somehow I have transformed from the fun-loving, “go ahead—run around the yard naked” sister to the iron-fisted therapist constantly trying to turn my brother into a “normal” little boy. I am disappointed in myself because I know I don’t even want normal. Normal is boring. Normal does not insist on going to school in full pirate attire—eye patch included. Normal does not run into my room at seven o’ clock in the morning, naked and singing Disney songs. Normal does not ignore me all day long and then kiss my arm before dozing off to sleep. I don’t want normal.
“I love you, Joshie.” I give him a quick scratch on the head and place my hand over his for just a quick second. Josh turns his head in my direction and then makes what remains to be the very longest eye contact I have ever gotten out of him. He pauses then leans his upper body in towards mine, sticking out his left cheek—his way of asking for a kiss. It is the universal gesture for the words he cannot yet say: “Jenny, I love you too. You are a great sister and someday I will tell you how much I appreciate you and days like this.”
Jennifer Cummings is a Behavioral Consultant in the Bay Area. She is the proud sister of three siblings, two of which have special needs. This story was written when she was 16.
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