The trip to the local pool was a great surprise for me. Joey hates people, but it was a Tuesday before noon and hardly crowded. Oddly, Joey entered without a fuss. I followed him around like pool like my aunt Zharmen followed my two-year-old cousin. When Joey splashed in the shallow end, I splashed back.
His favorite part of the pool was the water slide. We must have walked up those steps dozens of times. As he slid down the twists of the giant blue snake slide, he grinned. He splashed water below and waited for me to follow him down the slide.
Eventually, he figured out how to turn over on his stomach. My aunt Kathy and I laughed when we saw him do it. The lifeguard looked at us with a fake smile and said, “He can’t do that. Can you tell him to stop?”
“Joey, you can’t do that anymore. Stay on your back, sweetie.”
He laughed at me. I had no idea if he understood what I said.
We went down the slide, and he flopped over on his belly again.
“He’s really gotta stop doing that,” the lifeguard said.
“Well, I did tell him,” I said. “But Joey’s autistic. He doesn’t quite get it.”

Photo by Erin Galletta
Joey's mother, Liz, brushes off Joey's shoulders after a haircut on their back porch. Joey has never gotten a haircut from anyone other than a family member.

“Yeah, well, he can’t do that,” she said, not getting it, either.
Hey, blondie, did you hear what I just told you? My brother is au-TIS-tic. I can yell at him until I’m out of breath. He’ll just laugh because I’m being too loud, then he’ll flop over on his belly again.
I wish I had said that. Instead, we just stopped going on the slide. I was afraid we’d get to the top, and the lifeguard would refuse to let him go down the slide. That would have been enough to evoke a tantrum, which I will do anything to avoid.
Joey was diagnosed with autism when he was three. That’s a pretty average age for diagnosis. It’s been a bittersweet mix of explanations, patience and love. And it’s also been tough and frustrating. I spent the summer with my only brother, tracking his moves and getting a better understanding of my brother and what he means to my parents and me. Statistics and technical terms weren’t needed when writing this article. Instead, I wanted to provide a personal glimpse into growing up with an autistic brother.
Like any 13-year-old, Joey has his moments. But they’re different. He has never had a girl call the house, giggling nervously on the other line. He had never cared about a giant pimple on his nose on picture day. He has never even been busted for having a dirty magazine under the bed.
But Joey has gotten in trouble for licking pictures out of a photo album. He stuck them together, found an air vent near the ceiling and deposited them in the slot. He’s gotten in trouble for flushing toothbrushes, hair ties and bobby pins down the toilet, too.
This is all pretty normal to me.

 

Photo by Erin Galletta
Kelley Johnson, Joey's teacher and former camp counselor, helps answer questions on a worksheet that he fills out daily. The worksheet requires him to identify photos of what he ate for lunch and the activities of the day.

It’s hard to communicate with someone who doesn’t talk. Joey can get his point across fine — he grabs my hand and drags me to what he wants. Sometimes, I can just tell by look on his face. And it’s frustrating.
“Many with autism have difficulty developing the skills to verbally say, ‘I love you, mama,’ or ‘Did you know that’s my favorite truck?’ or make those kinds of connections that solidify for us that they’re communicating,” says Lisa Audet, assistant professor of speech-language pathology at Kent State.
Joey doesn’t talk — and neither can 70 percent of those with autism, Audet says — but that doesn’t mean he doesn’t have feelings. This misconception has lead some to believe that those with autism don’t see their parents as anything but ‘caregivers.’”
“I don’t think there could be a statement that’s further from the truth,” Audet says. “I operate under the assumption that people with autism are first and foremost human beings who crave human contact. Just because they lack communication skills, that doesn’t mean there’s not desire.”
Joey has that desire.
Our neighborhood swarms with kids ranging in age from 9 to 14. They play soccer in the cul-de-sac. And Ghost in the Graveyard when it gets dark and basketball in their front yards. Joey doesn’t play with them. He watches them from the front window.
If Joey could talk, maybe he’d play with them.
Audet says apraxia, a motor planning problem that keeps Joey from moving his muscles the right way, is most likely blocking this interaction.
Joey tries to talk. I tell him, “Joey, say Jaclyn.”
It comes out, “Jay-AH-clah.”
It’s frustrating, but endearing.
I got a true opportunity to get to know Joey this summer. While my parents took a vacation to Mexico, Joey and I stayed at my nani and papa’s in Illinois. And, gaining this “big sister” role, I learned the value of life. Joey was trying at times, but the summer with him taught me what being a sister is all about.
I fed him two Ball Park franks for lunch and two more for dinner, along with a variety of cheese crackers, trail mixes and Waffle Crisp cereal. And Diet Pepsi in between, whenever he wanted.
I bathed him. He undressed himself and got under the water, and I shampooed his hair from outside the shower with my sleeves rolled up.
I clothed him, handing him his underwear, T-shirt and denim shorts.
I brushed his teeth and cleaned his face with a wet washcloth before he went to bed and again when he got up in the morning.
“You gotta go pee-pee?” I asked him and then checked for any messes.
I tried to make sure he got out of the house at least once a day by making him take a walk with papa. The mismatched pair of a 13- and 74-year-old seemed natural: Joey doesn’t speak English at all, and Papa doesn’t speak it well at all. So they communicate in a weird sort of way.

Photo by Erin Galletta
"I take any opportunity I can to steal some affection from Joey."

Jaclyn kisses Joey before bedtime while they are brushing their teeth.

 

Photo by Erin Galletta
Jaclyn and her father, Ami, play with Joey just before bedtime when he is more affectionate."All the things that society places taboo anround, autism forces us to re-examine that," Lisa Audet, assistant professor of speech-language pathology said. "They're being so disconnected results in an inherent desire to communicate and they will find any way to do it. For your family, it's a pig pile in bed."

 Aunt Kathy, Joey and I had brunch the new day at Bob Evans. Joey only had a Diet Pepsi.
When we ordered, the waitress asked what he wanted.
“He’s getting my fries,” I say. “He doesn’t eat much.”
So the waitress brought our food and an extra plate for Joey’s fries.
“Here, eat this,” I say, picking up the longest fry and putting it up to his lips.
“Nuh nuh nuh nuh nuh,” Joey says, turning his head away and smiling.
“OK.” I retreat. “How about now?”
Same response.
“Please?”
No.
“Just one.”
Nope.
“Fine.”
This happened three or four times. I knew he wouldn’t eat any. I just felt I had to try.
We arrived at Blockbuster a few hours later to rent a video: A huge mistake because, like any time Joey gets too exicted, he gets nervous. His eyebrows furrow together, his eyes turn angry and he wears a deep frown. He clenched my hand all of a sudden, straightened his arm and pulled me sharply through the store. The aisles at Blockbuster were small, and the store was crowded.
He had already gone out once that day. I should have known better.
Joey acted up in the video store because of his anxiety, which is common for autistic people. Joey had been on Zolof, but those weren’t strong enough. He would still break into temper tantrums. So now he’s on Paxil and Clonadine “to ease the temper,” my mom says.

 

Photo by Erin Galletta
Joey stands far enough for comfort, but close enough to watch Jaclyn and Liz hold a conversation in the kitchen. He often follows his mother around the house.

Joey doesn’t eat much. When I described what I fed him in Illinois, I was serious. He hasn’t touched pizza since he was 3 and doesn’t eat hamburgers, candy or even macaroni and cheese. Once I tried holding his nose and force-feeding him, but he spit the food out. I’ve bribed him: “Joey, if you eat just one bite of this chicken, we’ll go un.” (“Un” refers to the noise a car makes. Joey likes to go for rides, so I tell him that we’ll go “un” if he does something he doesn’t want to.)
But Joey does like chips, crackers, pop corn, trail mix and other crunchy things.
“Humans learn about the world through our eyes, ears, nose and hands,” Audet tells me. “Your brother, he can feel this food in his mouth, so he can make sense of it. Give him a musky prune, and he can’t make sense of it.”
This input to the joints, also called a proprieoceptive input, tends to call him down. Think of runners, Audet says. When they run, she says, the “pound! pound! pound!” of their feet on the concrete calms them. Most children get this from physical activity.
“Kids with autism aren’t getting all that boom-boom-banging into their joints,” Audet says.
Joey also feeds this need for pressure on his joints by “swaddling.” He wraps himself up in his peach, queen-sized comforter and rolls around. “It’s why mamas wrap their little babies; because being wrapped calms them,” Audet tells me.
I visited Joey in September at Liberty Junior School, where he is in the seventh grade. When I arrived, he was “working.” The special education program includes a work program that teaches him everyday skills. I found Joey in the cafeteria with an oversized Pittsburgh Steelers ball cap. He lifted his chin and gave me a look that said: “What are you doing here?”
One of his teachers, Barbara Watson, led him to a refrigerator stocked with cans of juice. Joey’s job was to stock the shelves.
“He’s very methodical,” Watson tells me. “And he follows directions better when I point. He gets confused if I tell him what to do, so I just let him be.”
I stood there and watched for three seconds before Joey decided he didn’t want me there.
“Eh, eh, eh,” he says, turning his face away, reaching his arm toward me and flapping his fingers in a stiff “Goodbye.”
Clearly, I was getting in the way of his routine, so I went into a nearby hallway to hide. I inched my way back into the room where Joey was stocking the refrigerator.
“Eh, eh, eh.”
So I left again.

In dealing with autism, families tend to have one of two views, Audet tells me.
“Some accept the child as a person, where finding a cure is not priority but making sure they have an enhanced quality of life is,” she says. “And then there are those who want to find the cure. Is it medicine? Faith? Vitamins?
Joey has tried all those. And I’m not sure where we’re at.
Joey did the faith thing. He spent the night in churches, even visited a woman’s apartment where the walls were supposedly bleeding holy oil and had it rubbed on his forehead. A “psychic” has come over to the house. “When that guy used to come over, I hate it,” my mom says to me. “I thought he was a fraud.
“But you try everything, you try all the tests. You try everything people tell you. You pray for a miracle. It’s what you gotta do.”