As a teenager in Hoffman Estates, Sara Allgire was sure she knew why her older sister's young son acted out, threw tantrums and refused to speak or even look at folks.
"He is spoiled," Sara remembers telling loved ones. "There's nothing wrong with him."
Stop coddling the kid, who lived in Bartlett, and he'd shape up fast, Sara figured. Then she learned there was a reason young Alex acted the way he did.
"When my nephew got diagnosed, we were shocked," Sara says. "We had no clue what autism was."
Autism is the term for a wide array of disorders that can hamper a child's intellectual and social development. By the time Alex was ready for kindergarten, the boy needed help in the classroom. Off in college studying to be a journalist, Sara realized that she'd rather spend her time helping Alex and others like him.
"I stopped going to school and starting working with my nephew," Sara says. She got the training needed to be an aide in the classroom.
"Because of him, I began working in the field. I went to school with him every day," says Sara, who is 31 today and a graduate of Northern Illinois University. "Now I'm a special-ed teacher."
Working with Alex did more than change her professional life. Sara grew from a teenager who didn't know what autism was to a trained professional, an advocate and a volunteer with the Autism Speaks charity.
"It used to be very secretive. We did not tell people he had autism," Sara says. Now she sports tattoos of puzzle pieces, the symbol used to illustrate the ambiguity of the autism spectrum and the quest to find answers.
"I get a lot of questions about it. It was the reason I got it so I could talk about autism," Sara says of her autism tattoos.
She got her first puzzle piece tattoo on her stomach in 2003 at Rising Phoenix Tattoo in Addison, where owner Jaime Ozman inked in the design but also had designs of his own. When Sara returned a few months later for a new tattoo, Jaime remembered her and her puzzle piece tattoo.
"Do you want to go to a hockey game?" asked Jaime, who had never even been to a hockey game. A huge Blackhawks fan, Sara said yes to the game and the relationship. The 39-year-old Jaime, who grew up in Glendale Heights and served eight years in the U.S. Marines before he got in the tattoo business, married Sara three years ago. They live in Wheaton, enjoy frequent visits from Alex and are both autism advocates. Sara has taught school officials and police departments how to deal with people who have autism.
As part of their advocacy, Jaime and Sara will host a special fundraiser for Autism Speaks from noon to midnight on Saturday and Sunday in their Rising Phoenix Tattoo studio at 19W330 Lake Street in Addison. Jaime says 20 percent of their weekend business will be donated to the annual Walk Now for Autism Speaks on Saturday, May 12. For details, visit walknowforautismspeaks.org or risingphoenixtattoo.com. The Lombard-based Autism Society of Illinois (autismillinois.org) also hosts a walk on April 28 in Silver Springs State Park west of Yorkville.
Alex, 17, who now lives out of state and is about to graduate from high school, remains close with his Aunt Sara, whom he's always called "Miss Allgire" because of her years with him in school classrooms.
"He asks, 'Why do I have a hard time with friends?' He struggles with it. He knows he's different," Sara says. She remembers young Alex wanting to play hockey in the street with other kindergartners in the neighborhood, and being rejected.
"He said, 'Miss Allgire, you're my only friend.' It was heartbreaking," Sara recalls. "Me, being the person I am, I met some of the sixth-graders and they'd come over and play sports with him. When I got my first puzzle piece tattoo, it wasn't just for Alex. It was for all the kids I worked with."
When Sara got her first autism tattoo, experts said 1 in 150 children had the condition. Recently, new evidence suggests 1 in 88 kids has autism. With April being "National Autism Awareness Month," a litany of new studies have looked at potential causes (from older fathers to obese mothers) and given people hope that researchers eventually will find better treatments or a cure.
"Research is wonderful, but it's the here and now that is our motivation. We're helping families in the grind of it," says Mary Kay Betz, executive director of the Autism Society of Illinois. The more people know, the better.
"Everybody who knows me knows about Alex," says Sara, who gushes about what the boy and his autism have brought to her life. Pointing to her three autism tattoos, Sara quips, "I got a career and a husband out of these."