Will state take respite from families who need it most?

The stress levels of suburban families with autistic children are high enough without the drama of their funding being dangled off the edge of a political cliff.

As the hours tick closer to the midnight July 1 budget deadline, family members of 7-year-old Sam Weinstein of Schaumburg don't know whether state legislators will strip away the voucher that helps them care for the autistic boy, who is unable to speak.

"This," Barrie Weinstein says as she watches her son stand on a stool in the shower, "is my second-most favorite place for him to poop."

The afternoon shower is such an ingrained part of Sam's after-summer school/camp schedule, Weinstein can actually leave Sam in the shower unattended for a few seconds as she empties his backpack. The extra clothes she packed for him in case of a bathroom accident are missing, probably kept by a teacher or counselor for future use.

"He had a good day because he went and came home in the same clothes," his mom says. "We've been trying to potty train him for over four years."

Weinstein and her husband, Jeff Weinstein, editor in chief of Hotels magazine in Oak Brook, have been advocates for Sam since they realized their 6-month-old baby boy had development issues that fell into the autism spectrum. They moved to Schaumburg because they thought services for kids with disabilities were better there. They spent the equivalent of a college tuition ("We could have paid for him to go to Harvard," the mom says) on in-home therapies.

They diligently jumped through bureaucratic hurdles for most of a year to qualify the family for a state voucher that provides about $1,200 a month, Barrie Weinstein says.

"It's been a godsend. It really helps us," says Jeff Weinstein. "To lose it would be very difficult for us if we didn't have the money to bring people in."

This past weekend, the family hired a caregiver to watch Sam while the parents took their other child, 5-year-old Leah, out for bowling, lunch and a respite.

"We have a typical daughter, and we want her to have some semblance of having a typical time with her parents," the dad says. "We can't go to lunch with Sam."

The slight, silent boy with the faraway look needs so much care. While the Weinsteins appreciate wonderful, uplifting stories about autistic children, such as the autistic boy who made a bunch of 3-point baskets at the end of a basketball game, "that's not the autism we know," the dad says. "We have a kid who couldn't be more autistic."

Barrie Weinstein recalls a recent episode when Sam, left alone for a moment, trashed his little sister's bedroom and used it as his toilet.

"At night someone has to follow him around the house almost all the time," the mom says, explaining how rooms and cabinets must be locked. "My house is on lockdown. He must be under supervision almost every minute. It's really hard. It's very hard."

Even Sam's moments that are expected and welcomed seem stressful. One of the boy's favorite activities is to climb onto the kitchen counter and walk from one end to the other, balancing perfectly in the air as he navigates the narrow strip of counter in front of the sink.

"It's a labor of love," Jeff Weinstein says. "Your heart goes out to him. It's very rich and rewarding at the same time that it is difficult and sad."

Many families with an autistic child, or children, have even more needs, "but we need help," Jeff Weinstein says. "To see the governor play poker with our life is tough."

Sam's mom personally lobbied her local representative.

"I brought Sam into his office and let him run around and pull his pants down and do everything Sam does," Barrie Weinstein says. "I told him if my budget gets cut, my son will be spending the afternoons at his office."