A laundry basket is more than a toy for 7-year-old Valerie Jimenez. When she inverts the hamper over herself—concealing her torso but not her legs, which exhibit a drop-foot condition that prevents her from walking—she finds a source of security and a cozy haven in the darkness within.
“Valerie is not very expressive and basically lives in her own world,” says her mother, Ruth Aguilar (PSYC 4th year), adding that Valerie’s only words are an occasional “Mama.” “The basket is her favorite place; she likes to be in there all of the time. Valerie rarely gives me a hug; but when she does she expresses her love for me, and that hug is what keeps me going.”
Valerie’s development was normal until she was about six months old, when Aguilar noticed that her daughter began losing her balance and choking on pureed foods and liquids. Valerie slept much of the time, and her pediatrician noted that her head was smaller than average. Her brain stopped growing and so did her progress in motor skills, cognitive skills, and communication.
After performing various imaging modalities and tests to rule out Rett syndrome, Angelman syndrome, and autism spectral disorders, specialists at Children’s Memorial Hospital (now the Ann & Robert H. Lurie Children’s Hospital of Chicago) and LaRabida Children’s Hospital were mystified. Each year, Valerie continued to have an MRI and EEG to monitor any new abnormalities. When Valerie suffered a nearly fatal reaction to a new sedative in 2008, Aguilar made a series of life-altering changes.
“I decided not to subject Valerie to any more unnecessary treatment,” says Aguilar. “Along with this, I decided to go back to school to take subjects to help my child now, get rid of my constant depression, and learn how to make Valerie become as self-sufficient as possible.”
After earning an Associate in Arts degree and Certification in Child Development from Olive-Harvey College, Aguilar transferred to IIT College of Psychology as a Presidential Scholar. Through the Interprofessional Projects (IPRO) Program, she met Professor of Mechanical Engineering Kevin Meade, who became a mentor to Aguilar. He offered to speak with health care colleagues in Chicago, Houston, and Tampa, Fla., who might be able to help improve Valerie’s condition.
“When you learn about Valerie and her struggles, any person would naturally want to be of assistance,” says Meade, who is introducing Valerie’s case to his colleagues through a PowerPoint presentation that Aguilar created. “It is a tremendous challenge to identify people who can truly help, and it takes persistence. Ruth is a shining example of the strength of character you must have to meet this challenge. She has been an inspiration to me and the members of her IPRO team.”
Besides Meade, Aguilar is working this fall with Research Associate/Legal Fellow Sarah Blenner of IIT Chicago-Kent College of Law, in consultation with Assistant Professor of Rehabilitation Counseling Eun-Jeong Lee, on a new IPRO course—IPRO 374 A.C.T.I.V.E.: Redefining Perceptions of Disability. It is intended to enrich the lives of many children with disabilities and their families by investigating and addressing perceptions of disability. With her firsthand experiences to guide the team, Aguilar and her IPRO 2.0 group crafted their idea for A.C.T.I.V.E. (Assisting Children Toward Interactions in Vivid Environments) as a quality of life program.
“I know a lot of parents who keep their children with disabilities confined to their homes because they’re afraid to go out and be rejected,” she says. “Children need support and socialization to feel integrated within their communities. A.C.T.I.V.E. is meant to change their gray world into a colorful one by ridding the self-stigma and social stigma that come with disability.”
In the two-phase A.C.T.I.V.E. IPRO course, students will first conduct in-depth research on the perceptions of disability, available programs and resources, and how to create supportive and inclusive environments. In the second phase of the course, the team will design a program that an organization could use to promote the purpose of A.C.T.I.V.E.
“A.C.T.I.V.E. has a lot of potential both as a course and as a project,” says Blenner, who has been involved in several disability-related projects through her work at the Health and Disability Law Clinic at the Law Offices of IIT Chicago-Kent.
While Valerie interacts with other children through a Chicago Public Schools special-education program and physical therapy sessions, Aguilar also guides her daughter in memory-recall exercises at home. Aguilar is hopeful that one day physicians will pinpoint her daughter’s condition and its specific treatment plan. For today, many of Valerie’s victories take place not far from her inverted basket.
“I’m focusing on how to help Valerie remember things in order for her to keep learning instead of forgetting, and I see slow but steady progress,” says Aguilar, her face beaming. “Before, she couldn’t crawl, but now she is. That may seem like a little thing, but to me, it’s a big improvement.”
“School-Aged Children with Disabilities in U.S. Metropolitan Statistical Areas: 2010” (United States Census Bureau): www.census.gov/prod/2011pubs/acsbr10-12.pdf