For many children, the first day of school is a day of anticipation and nervous excitement. As students riffle through unfamiliar textbooks, inhaling the heady scent of freshly sharpened pencils, they envision the new academic year as a blank page full of possibility.
But for a child whose educational progress has been hampered by frequent medical appointments and hospitalizations, a new school year may evoke feelings of dread.
Children with sickle cell disease and hemophilia often miss more days of school than their healthy classmates. The physical effects of the disease may also result in academic underachievement.
St. Jude Children’s Research Hospital staff members are working to ensure that children with these disorders have the reading skills they need for academic success.
A STARR is born
An engaging, talkative third-grader, Elijah Mayfield receives treatment at St. Jude for hemophilia, a rare blood disorder. He is one of 13 children who took part last summer in a Success Through Academics, Resources and Research, or STARR, reading clinic. This St. Jude program is designed to improve reading and comprehension skills for children with sickle cell disease and hemophilia.
“It helped me learn some words that I didn’t know yet,” says 9-year-old Elijah. “It helped me sound out words.”
Elijah’s mom, Lucille Mayfield, agrees.
“He reads everything,” she says. That includes mail, text messages, and, more importantly, school assignments.
Many children with sickle cell disease have problems recognizing specific speech sounds. This may negatively affect their ability to use those sounds to process a teacher’s spoken instructions or information in a textbook.
Molly Freeman, an academic coordinator and reading instructor in St. Jude Hematology, worked with a student a few years ago who had difficulty identifying the “aw” and “au” sounds.
Finally, Freeman saw the light bulb go on. The boy slapped his forehead, and, with wide eyes, said, “Nobody ever told me that!”
Proud of his newfound knowledge and accomplishment, the boy began picking out correct sounds without delay.
Children who have completed the St. Jude reading clinic during the past eight years have shown significant gains in reading skills measured before and after eight weeks of instruction. Test scores revealed significant age- and grade- level improvement.
“This is an incredible effort not only to care for our patients when they’re here on our campus, but to support them through the continuum of their care and ensure that they have the skills they need to live the best possible lives,” says James R. Downing, MD, St. Jude president and chief executive officer.
Students in the clinic use educational materials that intensify their senses—whisper phones, small mirrors, colored felts—to develop an ability to identify and manipulate speech sounds. As part of that process, children increase their reading comprehension skills.
In addition to the reading clinic, the STARR program’s coordinators work with educators at schools ranging from preschool to college to help ensure each patient’s academic needs are met. St. Jude staff members also educate teachers about the academic implications of sickle cell disease and hemophilia. And parents learn simple techniques they can use at home to strengthen areas of weakness.
The sky’s the limit
Freeman and her colleague Jacklyn Boggs take pride in St. Jude patients’ responses to the experience.
“I’ve had kids who couldn’t read a lick,” Freeman says, reflecting on her years as a reading instructor. “Now I see them as teens. They can read and they’re flourishing. This is wonderful.”
With Boggs’ guidance, Elijah recently read Different is Awesome by Ryan Haack, a book about a young boy with an upper limb difference.
“He did all these amazing things,” Elijah says. “He knows how to tie his shoe!”
Without a doubt, Elijah will continue doing amazing things, too.
From Promise, Winter 2017