"In terms of educational instruction, Adelai’s IEP was ignored."

About: Adelai (15)

Age Range: 14 to 21 years

Perspective: Student interview of parent

County: Davidson


 

Adelai is 15-years-old and has global developmental delays, an intellectual disability, and epilepsy.  She has daily seizures even though she is currently on medication. Joe, her father, admits that there are stronger medications available that will bring her seizures under control, but usually at the cost of Adelai losing all function. She also has a vagus nerve stimulator to help control her bigger seizures. The stimulator comprises of a wire that is wrapped around her vagus nerve. The wire is controlled by a device that sends a jolt of electricity to her brain when turned on and off and offsets her more severe seizures. Despite having so many seizures, Adelai is still able to function after one and can sometimes continue communicating with her parents while she has one.  Another challenge Adelai faces is that she cannot feed herself and must receive nutrients through a feeding tube connected to her stomach. Her parents prepare liquefied meals and directly inject this into her digestive system.

Another challenge is Adelai’s limited ability to express herself verbally. She has trouble talking, but her family has come to understand her through an elaborate breathing and sniffing system that Adelai developed.  To respond to “yes” or “no” questions, Adelai will change the cadence and pattern of her breathing to convey her response, usually three short sniffs for “yes” and one long breath through her nose for “no.” Adelai has recently started working with a 16-button talker through which she is able to answer basic questions.

Education

Adelai has gone to both “good” and “bad” schools. When she was still young, Tennessee Early Intervention Services directed Adelai and her family to an inclusive preschool. Adelai saw a lot of growth and development during her time there, and Christy, Adelai’s mother, considers her teachers as “the best teachers we ever had.” After preschool, Adelai attended a public elementary school where she continued to thrive. Adelai was enrolled next at a school that specializes in special education, but she encountered many problems. For example, according to Christy, Adelai was neglected and had a lot of accidents. When Christy confronted the school about these accidents, the school placed the blame on Adelai.  In terms of educational instruction, Adelai’s IEP was generally ignored. After her struggles there, Christy and Joe transferred her to a school where she received one-on-one instruction. This helped with her development and she began talking more and could walk without a wheelchair. Adelai is now in the 9th grade at a public high school. She is learning how to read and can even pick out words. In the afternoon, Adelai participates in different activities that help her build life skills. She delivers mail at the school. Every Wednesday, she helps stuff boxes of school supplies for the non-profit LP PENCIL Box, and every other Friday, she goes on shopping trips. Christy and Joe are very satisfied with the current education Adelai is receiving and hope to have her stay until she is 22.

Future Concerns

In terms of long-range plans for Adelai, Christy and Joe are taking a day-to-day approach. Her school wrote a transition plan for Adelai, but failed to include Christy and Joe in the process, so they are uncertain about what it entails. Despite this, they do have some ideas about how they want Adelai to progress after she finishes school. They would like her to be as independent as possible. They also feel that their role is to encourage what Adelai wants and find the resources to support her no matter what she chooses.   

 

Updated on Thursday, August 2, 2012