I know I’ve been cruel lately, talking about some project I’ve been working on since, like, November. Well, I’m finished! Would you like to see?
((Huge huge huge thanks to Dana, Stephanie, Lindsay and Bonty for being my editors on this bad boy. I owe you all. Mucho love, jy))
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When I used to use a pencil and paper to write words, over and over again, it was to learn to spell them.
Pseudonym. Pseudonym. Pseudonym.
When my brother writes words over and over again, it’s because he wants that particular object. A year or two ago, Mom told me on the phone that Joey had been writing my name over and over again.
Jaclyn. Jaclyn. Jaclyn.
She said it in passing. She didn’t know I started crying on the spot.
It is not often that I write about Joey, partly because Mom doesn’t like it when I do and partly because I never know what to say. Joey has made me into who I am more than any other factor in my life, and that’s not easily condensible.
My reason for writing this is because I can’t not, because I’ve wanted to for years and haven’t known how to start. It’s 100 percent selfish. I could say it’s to inform people about autism, and I suppose “informing” will be an effect. It is not, however, the cause. The cause is me.
Jaclyn. Jaclyn. Jaclyn.
I was 5 years old, laying on my belly, chin propped in my hands and watching Tom and Jerry, when my mom called me into the hallway. How would I like a new brother or sister? she asked. I’d like a new sister, I said. Can I go watch Tom and Jerry now?
When Joey came along, I remember wanting to hold him a lot. I remember wondering if anyone else realized that he was impossibly adorable, much cuter than the other sea-monkey babies I saw. I remember marveling over his head, an exact replica of a bowling ball.
I remember him babbling. He said “Bob” a lot, and we figured it was his imaginary friend. I remember him eating pizza. I remember him staring at ceiling fans the way a man will stare at a startlingly beautiful woman: unblinking, mouth slightly agape and for a second too long.
Then he called upon Bob less and less. He stopped eating pizza. The ceiling fans won more eye contact than Mom, Dad and I combined. I remember Mom and Dad yelling. Crying. A fist through a door. Doctors. More doctors. Good God, more and more doctors. I do not remember anyone telling me my brother had autism.
He is 20 years old now. He has never kissed a girl. He has never driven a car. He has never said a word.
But then, he’s never told a secret, either. In high school, I’d crawl in bed with him and complain about boys, friends, parents and other end-of-the-world problems. He still hasn’t told.
He’s about my height now, maybe a little taller. I can wear his shoes, and his sweatshirts. Dad used to joke that he could park the family’s Isuzu Rodeo in my nose. If this is true, Joey’s honker could double as an airplane hangar. He has funky teeth because he’s not very good at taking care of them. His eyes are my color, so brown they’re almost black. His close-cropped dark brown hair feels like a Brillo pad. I think he has a receding hairline. He’s very handsome. When Mom takes him grocery shopping, girls look at him.
He doesn’t like change, a trait common in people with autism. Dad guesses that’s why Joey wants me home all the time, why he calls for me by writing my name over and over. I lived at home for 18 years before moving away for college. I lived home during most of those summers. After graduation, I lived at home for a year. Joey’s world is right when I’m asleep in the room where he typically spends most of his days watching Cartoon Network and eating cereal and crackers. He does this in bed, so when I do visit, Mom and I change the sheets so I don’t have to roll around in crumbs all night.
I have considerably less interaction with my brother than other friends have with their siblings, though he has shaped more aspects of my life than I can possibly count. He’s responsible for much of my religious beliefs. He’s responsible for the family I envision for myself in two, five, 10 years. He’s to blame for the only thing I truly envy in life: my friends who are close to their brothers and sisters. I adore hanging out with these siblings. I can’t help but study their interactions, the silly bickering of brothers over beer at BW3, the reminiscing of sisters over who stole whose shoes in high school and gave the other a bloody nose. I am a voyer into these interactions. I want to crawl inside them and claim them as my own, a thief with loot much more valuable than an iPod or the contents of a bank vault.
I wish I could say I’d never change Joey for anything, but that’s a bold-faced lie. Of course I’d change him. I’d make life easier for him. I’d give him the ability to convey his thoughts; often, for children and people with autism, the biggest frustration is the inability to communicate. They simply lack the knowledge about how to interact with others. As such, I do what I can to start that communication, even if that’s by pissing him off: Joey has a stool at the island in my parents’ kitchen. It’s Joey’s seat. If someone else is sitting there when he walks into the kitchen, he will order that person to move.
I love being that person. I sit there on purpose just so he tells me to get out, arm stretched in front of him, fingers flapping, brow furrowed. Stealing his spot makes him pay attention to me.
April is Autism Awareness Month. What you should be aware of is that autism affects one in 110 children and one in 70 boys. Those numbers are jaw-dropping, though they do include milder diagnoses on the autism spectrum, like Asperger’s syndrome, which looks very, very different from Joey’s pervasive developmental disorder-not otherwise specified, or PDD-NOS, if you know the lingo. Doesn’t matter. It’s an ugly diagnosis that affects beautiful people.
I wish I could do more to help with the problem. I could never teach or work with people with autism; I’d go home and cry until I hyperventilated every day. I’m not that strong, but I can write, and I can give money to people much smarter than I. I make jewelry and sell it on Etsy. It’s a meager little side hobby, but it’s fun, and it keeps me out of trouble. Throughout April, I’m going to donate 25 percent of sales over at Jac & Elsie to Autism Speaks, the U.S.’s largest autism advocacy group geared toward research, treatment, prevention and the like. For custom sales, $2 will go to Autism Speaks.
Most exciting, however is the debut of Joey’s Hot Dogs, a necklace that will become a staple over at Jac & Elsie. In addition to the crackers and cereal that litter my bed, Joey eats hot dogs. Ball Park Franks, boiled, sliced down the middle length-wise, then cut into bite-sized pieces. Two of them for lunch, two for dinner. Joey’s Hot Dogs necklaces are 18 inches long and come with a pewter hot dog, plus a silver-toned puzzle piece — the symbol for autism — and a yellow, red or blue bead. I’m selling them for $11 each, and $5 of every sale will go to Autism Speaks, even when Autism Awareness Month is over and done with. Personalize your Joey’s Hot Dogs necklace with an initial charm for an extra $3.
I turn 27 on April 14. This is my birthday gift to myself.
This, and some framed artwork a la Joey. The kind that has my name on it, over and over and over.