Like their classmates, Sam Barton and Grace Spence have spent the last few years navigating adolescence in the hallways of the Forest Park Middle School. They’ve slogged through homework assignments, suffered the pleasures of their first crush and contemplated what it means to be cool alongside hundreds of peers eager for the adventures of greater independence.
But unlike their classmates, these two teens have had to contend with handicaps that offer daily hurdles to otherwise routine activities.
In early 2003 doctors discovered Spence had a sizeable brain tumor that, after an emergency surgery and months of follow up treatment, has had lingering effects both physical and cognitive. Meanwhile, spina bifida has forced Barton to rely on his wheelchair and a pair of crutches to get from class to class.
Tonight, Spence and Barton clear one more hurdle as members of the district’s graduating class of eighth-graders. The students will turn their tassels this evening at a ceremony hosted at Proviso East High School.
Della Hosty is one of two specialists in District 91 charged with ensuring that students with special needs get the appropriate guidance and support. Before joining the Forest Park schools she worked with children in Florida who were unable to attend classes due to, among other things, illnesses. In Barton and Spence, Hosty said she’s found two kids who want to do more than just survive.
“They’ve made a difference in my life,” said Hosty, who worked daily with both students over the last two years.
Barton, the youngest of three adopted children in the home, often helps care for his 22-year-old brother who has cerebral palsy. He plays wheelchair basketball, can bench press 130 pounds and enjoys performing in the school choir and theater. He would like to be a veterinarian, but secretly aspires to be a rap artist.
Because he seems to befriend everyone he meets, he has earned the nickname “the mayor.”
Peers and adults alike know Barton for his incredible energy and optimism and, never, he said, has he been told not to try something because of his disability. In fact, classmates often seek him out for advice.
“I usually just tell them that if I can do it, you can do it,” Barton said.
Since she woke in the middle of a January night suffering from seizures and vomiting, life has not been the same for Spence. She missed the end of her third-grade year for a months-long series of treatments, but was able to rejoin her classmates for the start of fourth-grade. Spence walks with a pronounced limp and often stays within reach of the hallway walls to brace herself as she hustles from one class to the next. The tumor in her brain greatly diminished the strength in the right side of her body and she tires more easily than her peers.
Before her cancer, Spence was right handed. She’s since taught herself to write with her left.
She’s not a big fan of math class, but loves spending time with her friends and listening to the up tempo music of Fallout Boy and Good Charlotte. Like many kids her age, Spence bemoans her 10-year-old sister. She says she would be happiest working as a kindergarten or preschool teacher and harbors an almost universal fear in starting high school next year.
“I’m afraid I’m going to get lost,” Spence said.
Spence’s mother, Marie Spence, said her family has spent a lot of time worrying about the seemingly endless onslaught of medical expenses that has come with treating their oldest child. Even with health insurance and generous neighbors Marie Spence said she can’t help but wonder what will happen when Grace is no longer covered by her parent’s insurance plan.
Marie Spence is confident, however, that her daughter will find ways to cope with whatever comes her way.
“She never felt sorry for herself,” Marie Spence said.
Donna Barton, Sam’s mother, has spent more than two decades working with disabled children both as a nurse and a foster parent and described her son as having the remarkable ability to “diminish his disability.”
“We joke that we forgot to tell Sam that he’s disabled,” Donna Barton said.
That he’s in Forest Park at all is something of a tale. Donna Barton said she wasn’t thinking of bringing a third child into her home, but one day the agency she works with as a foster parent asked if she’d be willing to temporarily take in a newborn with spina bifida. Her answer was no. Without so much as having seen the baby, Donna Barton agreed to adopt him.
“I couldn’t believe what was coming out of my mouth,” she said.
For Grace, Sam and all of her eighth-grade students, Hosty said a focus of that school year in particular is pushing the kids harder and making bigger demands. In high school – and in life beyond the classroom – children with disabilities will have to face an even tougher reality than they already have, said Hosty.
For Grace, both her mother and her teacher said one of the potential pitfalls will be learning to be more self-sufficient. Hosty described the teenage girl as a “classic chemo kid” who, over the course of several years, has grown accustomed to adults fussing over her in a way that healthy children don’t normally experience.
Sam’s confidence and personality have likely equipped him well to tackle new challenges, according to both Hosty and Sam’s mother.
In meeting their own challenges, both of these graduates have made a mark on their classmates and their teachers in District 91, likely pushing many of them to realize what Donna Barton said is one of life’s great truths.
“The secret of the universe, and you won’t realize this until you go through this, is [perfection] doesn’t matter,” Donna Barton said. “Everybody has the same right to be here.”