"“The public school system is preoccupied with passing the problem down…when it comes to dealing with the educational system, parents must be courageous and willing to battle.”"

About: Kora (4)

Age Range: 3 to 5 years

Perspective: Parent Student interview of parent

County: Davidson

The Family
Stevie and Devin are a young and free-spirited couple with a four-year-old daughter named Kora. Kora has been diagnosed with CHARGE syndrome. CHARGE syndrome includes a pattern of recognizable birth defects including: a cleft in the opening in the eyeball; a problem adjusting to bright light and significant or total vision loss; heart anomalies; a blockage of nasal passages; retarded growth and development; underdevelopment of the genitals; and unusually shaped ears and hearing loss. Despite the complications associated with her diagnosis, Kora is an energetic and happy child.

Her parents describe her as being very caring, affectionate, and intuitive. Kora has difficulty
standing, walking, communicating, and sleeping. When it comes to responding to other
children, oftentimes Kora exhibits aggression or indifference. She also has problems recognizing boundaries, especially with strangers.

The greatest challenges currently facing the family are educational issues. Kora is not enrolled in the type of program her parents would like, and her Individualized Education Plan (IEP) is not being honored. Although placement in a total communication classroom* was one of Kora’s educational goals, she spent the entirety of last fall in a Life Skills classroom**.  At the beginning of this year, the school district unexpectedly announced that Kora would not meet her IEP goals, and due to routing would need to be moved to another school.

Transportation to school has been a very difficult issue for the family. Kora is scheduled to eat breakfast at school each morning. However, the bus arrives too late for her to make it to school in time for breakfast and often in time for class.

Overall, the family’s experiences have led them to believe that the public school system is
preoccupied with “passing the problem down” and that when it comes to dealing with the
educational system, one must be “courageous and willing to battle.”

The Future
Stevie and Devin hope to have Kora in an inclusive, total communication class next year. They are thinking about the future only in terms of wondering what Kora will be like when she is a teenager.

*Total Communication Classroom: A classroom equipped with the ability to use oral and manual communication systems.

**Life Skills Classroom: A classroom that includes components/curriculum necessary to aid students in developing the functional skills needed to manage their lives independently.

Updated on Friday, October 14, 2011