At one point in his journey with epilepsy, Stephen was experiencing daily seizures that disrupted both his sleep at night and his school life during the day. Not surprisingly, the Skokie youngster was facing academic challenges since the seizures made it difficult for him to concentrate and process information, in addition to the social implications of having seizures in front of his classmates.
To provide Stephen, now 10, with the best opportunity for academic success, his parents, teachers and medical team came together to jointly address how the seizures were affecting his cognitive and social development. Robert Blaufuss, MEd, education specialist for Children’s Epilepsy Center, has played a key role in bridging communication between Stephen’s caregivers and teachers.
A teacher and principal for 38 years, Blaufuss is perfectly suited to collaborate with school personnel. “My focus is translating medical information, explaining how seizures impact a child’s brain, so that a personalized education program can be developed for each child,” he says.
Over the last decade, Blaufuss has become highly knowledgeable about anti-seizure medications and their potential effects on learning, such as fatigue, behavioral changes, concentration issues, memory lapses and cognitive slowing. Without a clear understanding of these side effects, children with epilepsy could be mislabeled as disobedient or unmotivated students.
Blaufuss participates in the epilepsy center’s weekly rounds, where physicians, nurses, a dietician, social workers, psychologists and other team members discuss patient developments. “The information I share with a child’s academic team reflects the entire medical team’s perspective. It’s one of the many benefits of our multidisciplinary approach,” he says.
In addition to educating Stephen’s teachers about seizures, Blaufuss gave an age-appropriate presentation to Stephen’s fourth grade classmates last year. “Children tend to worry that something bad is going to happen to their friend with epilepsy, so it’s important to calm their fears and to foster a culture of kindness and acceptance in the classroom,” he says. Stephen’s mother, Christine, says it was beneficial for the class as a whole, as well as for Stephen, who felt empowered by the experience and enjoyed helping with the presentation.
Today Stephen is thriving at school and his seizures have largely subsided, thanks to the ketogenic diet. Christine and her husband Andrew, who have three other children, feel hopeful about Stephen’s future. “We realize how lucky we are to have found Dr. [Douglas] Nordli and the team,” she says. “Everyone at Children’s has been amazing to us. They’ve really bent over backwards to help our family.”
Children’s is the only known children’s hospital in the U.S. to employ a full-time professional focused solely on epilepsy education and outreach with the school systems. It is a unique and valuable service offered to families entirely through donor support, like that of Aida Snow, Gail and Jim Manz, the Maurice R. and Meta G. Gross Foundation, K.I.D.S.S. for Kids and others. With demand increasing, the program has expanded to the region’s suburbs. Blaufuss now travels to dozens of schools within a 50-mile radius of Chicago, averaging more than 125 contacts and visits a year. He also provides phone consultations for families living abroad. The ever-busy Blaufuss, who came out of retirement for this role, says he looks forward to coming to work every day.
“If I can help, even in the smallest way, to make the lives of these families better, especially after they’ve been through so much, then I’ve done my part,” he says. “To see a child’s life improve before your eyes is incredibly rewarding.”
This article first appeared in the Spring 2009 issue of Heroes magazine.