Stebbins measures out his son’s daily dose of medicine and sucks the concoction into a plastic syringe.The 45-year-old can’t read the labels on the bottles — or really anything else for that matter — but Stebbins has managed to deliver the right medicine at the right time for the past nine years.”I recognize what he needs by the bottle the drugs come in,” Stebbins says, drawing the last of the syrup into the syringe. “You don’t need to know how to read to know how to love.”Stebbins turns from the kitchen counter where the drugs reside and calls to one of this sons, who is sitting in the living room.”Come on John John. Time for your medicine,” the father says to his son. Stebbins picks up the boy, sits at the dining room table and places John John on his lap. Both John John and his twin brother Christopher have cerebral palsy, a neurological disorder that affects muscle movements and fine motor skills.Stebbins injects the drugs into a permanent tube protruding from his son’s stomach. The Tang-orange liquid courses through the clear tube. John John softly smacks his lips.
“I think he can taste it,” Stebbins says. “You can smell peppermint on his breath after.”
The drugs help boost the boy’s immune system and loosen his stools, the latter a problem because he doesn’t chew his food thoroughly enough.
As the final bits of medicine disappear, Stebbins pulls down his son’s blue shirt, covering the boy’s pale belly.
John John looks up at his father and smiles. Stebbins, who’s missing his front teeth, smiles back.
“There you go, John John,” Stebbins says, setting the boy down on a patch of carpet covering the plywood floor. The 9-year-old’s tendons and muscles are tighter than most at that age, so he walks on his tiptoes — like he’s crossing a pile of hot coals. He goes over to a bin of toys a few feet away where Christopher is already searching for matchbox cars.
Christopher pulls the cars out, walks over to the sun-bleached blue and white couch and arranges them in a straight line along the armrest.
While the boys are identical twins, the scope of their motor and mental disorder varies greatly between the two.
John John only recently started talking, announcing his favorite word, “Bye-bye,” anytime someone leaves a room. He took his first steps less than a year ago. He wears plastic braces on his legs to force the backs of his heels down and give support to his legs.
Christopher, on the other hand, started speaking and walking when he was about 11/2, Stebbins says.
“Daddy, here,” Christopher says, pointing to the couch. “Sit here.”
Stebbins walks over, sinks into the couch and watches his sons play.
On paper, John Stebbins is an out-of-work, illiterate, divorced, single dad, an odd person to care for two boys with cerebral palsy. In person, however, he’s has proven that money and education aren’t required to make a home a happy one.
He has developed a community — a network, really — of teachers, charitable organizations, family and government aid, all of which help offset medical costs and the general strain of raising two disabled boys.
His sister-in-law, who lives nearby in Bonita Springs, reads his mail. His brother Frank gives him a free place to stay. A local nonprofit provides medical equipment. The twins’ school, Poinciana Elementary School, provides breakfast and lunch.
“We take it day by day,” Stebbins says.
An oscillating fan near the front screen door clicks back-and-forth, circulating what feels like 90-degree heat. This happy home is more of a shack than a house you’d expect to find in downtown Naples.
Less than 10 miles from Fifth Avenue, this place is about the size of a two-car garage. There are two small bedrooms, each just large enough to fit a twin bed; a narrow kitchen and a bathroom-sized living and dining area. The walls and floors are plywood. The roof is metal.
Stebbins and his sons sleep in bunk beds. The boys get the bottom.
They live with Frank, a lawn maintenance worker in Naples. Frank owns the house.
John Stebbins, a former heavy equipment operator who grew up in Naples, has been out of work for the past two years. “I don’t work. I just take care of my two boys,” he says, explaining that when he was married to the boys’ mother, caring for the boys was easier. These days, when the boys are in school, Stebbins and his brother, Frank, work on improving their house.
They just put in new front windows with screens.
“We get more light this way,” Stebbins says one afternoon as he looks over his work.
But as far as a more-substantial daily job, all he has to say is: “My kids are more important than a job. I can get another job.”
The boys’ mother, Penny, lives in North Carolina.
“She just couldn’t handle the boys,” Stebbins says, adding that Penny is a diabetic.
“I don’t think their mother could take care of them,” he says. “I know it makes her sad to be away from them, but she just can’t be there for them physically and emotionally.”
“My brother is a saint,” says his sister-in-law, Heidi. “He does the best he can with what he has. A lot of people underestimate him. They hear he can’t read or that he’s out of work, and they think that puts him on a lower class.
“He takes care of his kids better than people with twice the ability and resources,” she says. He supports his family on $1,100 per month, which the boys get as federal disability aid. He uses food stamps for the meals he has to cook at home and depends on the boys’ elementary school for the their breakfast and lunch.
Last week, Stebbins spent $30 on new shoes for the twins.
“It’s the second pair this year for John John. He wears ’em out crawlin’,” Stebbins says. “I got one pair for $19 and got the other half off. I really couldn’t afford it, but the boys need shoes.”
It’s those kind of small but essential expenses that seem to be the most troubling for Stebbins. Thirty dollars is a massive chunk of his budget.
“We are always here to help, no matter what Dad needs,” says one of the boys’ teachers, Judy Mangiaracina. “If we have extra clothes or materials, we send that stuff home with him.”
Mangiaracina has worked with the twins for four years as part of the school’s “Exceptional Student Education” program. She says Stebbins has always struck her as a capable and caring father.
She works with disabled or challenged kids on a daily basis, but Mangiaracina admits she’s thankful that it’s only a job and not a full-time lifestyle.
“It takes a lot of work — a lot of patience — to deal with these children. I’ve done this my whole life, and I’m so grateful that I don’t have to go home to one of them.
“Take John John: He may be 9, but developmentally he’s somewhere between 18 months and 3 years old.”
On a recent afternoon, after Stebbins drops the boys off for school, he grabs a handful of mail resting on the passenger seat of his car.
“I’m just gonna go into the office to take care of this,” he says. The pile of mail is made up of brochures and fliers for school sports and yearbook photos, but Stebbins needs help reading them.
“They help me out when I need it,” he says of the school’s staff. “I know the boys aren’t going to do sports, but they’re going to need photos, I think.”
Another source of help for Stebbins and the boys comes from the Ricky King Children’s Fund, a Naples-based nonprofit that provides healthcare funds and assistance to children in need.
“I think their situation is probably one of the worst that I’ve seen, especially in Naples,” says the executive director of the fund, Jennifer Weidenbruch. “They live so near Fifth Avenue — you have this man living so close and still struggling so much.
“I feel bad for John because he could be embarrassed about a lot of the things he doesn’t have or can’t do,” she says. “You know, things like not being able to afford basics like diapers for the boys or a wheelchair for John John. But even if you or I might be embarrassed, he still asks for help.”
Over the past year, the fund has given the boys a year’s supply of diapers ($1,216) and John John a wheelchair ($750).
“He knows he can call me if he needs anything,” she says.
And while Stebbins freely accepts needed help, he is still a proud man who works to do things on his own, Weidenbruch says.
“One thing that I found touching was that I told John I wanted pictures of the boys, and I said I would come out to the house and take them. He said, ‘No,’ ” she says.
“He saved up for a couple of months to buy a couple of disposable cameras to take the pictures himself. Once he took them, he said he could only afford to get one of the cameras developed. But he did it. I think it was important for him to show that he can do things for his children as well.”
John Stebbins grabs Christopher and kisses his cheek.
Christopher lets out a giddy laugh.
“Daddy,” he says with a smile, putting a matchbox car in Stebbins’ hand.
“They still let me kiss and hug ’em. They’re still happy to be around their dad,” Stebbins says. “I’ll take that for as long as I can. A lot of kids their age don’t want that.”
John John crawls on the floor toward the couch, standing up at the last moment. He takes a few steps and takes a seat next to his father.
Christopher nudges in on the other side of Dad.
“They always want to be nearby,” Stebbins says, scooting to the middle of the couch so everyone can fit.
The plywood floor underneath creaks as the the get settled. The fan still pushes the stiff heat, clicking backand- forth.
“I want people to learn that it’s not hard to take care of handicapped kids. Well, it is and it isn’t hard. A lot of people just give up on them,” Stebbins says. “There’s never a good reason to give up on them.”
He knows John John will probably never be able to function on his own. He knows Christopher will eventually grow up and leave home. But Stebbins says he’ll manage.
“I’m gonna take care of John John as long as I’m alive,” he says. “As long as I’m breathing, I’m gonna be there for that boy.”
If, for some reason, he can’t care for either boy, Stebbins says a family member has agreed to take them. “These boys are my life,” he says. “I’m gonna keep this family together and make sure my sons are happy.”
—“THE RICKY KING FUND”
Jennifer Weidenbruch, Executive Director
5051 Castello Drive, #21
Naples, FL 34103
Phone: (239) 262-1808
Fax: (239) 262-4457