Paul Butler and his wife, Diane, had all the expertise in the world when it came to working with kids on the autistic spectrum. Paul was a teacher and assistant principal with years of experience at Carrie Jacobs Bond Elementary School in Englewood (with an advanced degree in special education), and his wife a special-ed educator. But when it came to helping their own autistic son, Shakir, they were overwhelmed. Butler admits, “If we were having problems, I couldn’t imagine what single parents were dealing with.”
They turned to the Chicagoland Autism Connection, an autism support group started in 1997 by two South Side Chicago moms who were tired of running all over the metro area to learn about the disorder affecting their kids. After his son’s situation improved through their involvement with CAC, Butler decided one thing: “I had to pay it forward and help other kids as well,” he says. So instead of retiring after his 35 years at Carrie Bond, today Butler is the president of the organization, which supports both parents and kids affected by the disease.
On the third Saturday of each month, CAC offers meetings for parents, covering topics ranging from how to obtain Social Security benefits for treatments to how to balance care for non-autistic siblings in the family. Parents who attend needn’t worry about getting a baby-sitter; free professional respite care is provided down the hall.
More than 600 families attend the cheap or free year-round events, no membership required. The free annual Spring Fling, this year on Saturday 2, offers all-day workshops and exhibits informing parents on everything from how to talk about sexuality with their kids on the spectrum to where to find quality child care. Summer brings the org’s annual pool party, for which a water park like Bolingbrook’s Pelican Harbor is rented out for the day so families have the place to themselves. “Kids with autism can’t always go to big, pubic places because they might be intimidated by the sights and sounds, and the general public can make that uncomfortable for families,” Butler explains. A family dinner dance is held in the fall, and activities such as visits to Dave and Buster’s, horseback riding, haunted houses, a bowling league for young adults and even camping outings are peppered throughout the year.
What makes this schedule even more ambitious is that CAC is a nonprofit entirely run by volunteers. On top of that, the organization’s publicity extends only to its website, parental message board and word of mouth. Butler admits trying to get grants is always an uphill battle, but says CAC’s objective above all is to guarantee that families can participate in events without financial strain. “We call ourselves a small group who does big things with a small amount of money.”
This impact couldn’t be more evident than in the outpouring of parental feedback the org receives daily. Its message board, which totals almost 8,000 posts, has everything from parents commenting on the best special-needs apps to outright cries for help to thanks for program recommendations and seminars. Butler says, “I like to think we’ve thrown families a lifeboat, given them a chance to talk to other parents going through what they are, and say, wait, there is hope.” No one realized this more than Butler himself, whose son is now 18 years old.
“He will never be fully independent, but he’s doing great,” Butler says. “There’s no such thing as an expert in autism. But I watch the families in our group recognize each other as significant people in each other’s lives. Quite simply, when we share our stories, we make more sense of it.”
CAC’s Spring Fling is Saturday 2; go to chicagoautism.org.