Defense Date

7-2-2024

Graduation Date

Summer 8-10-2024

Availability

Immediate Access

Submission Type

dissertation

Degree Name

PhD

Department

Counseling, Psychology, & Special Education

School

School of Education

Committee Chair

Dr. Tammy Hughes

Committee Member

Dr. Ara Schmitt

Committee Member

Dr. Kara McGoey

Keywords

RYR1-related diseases, congenital myopathies, educational experiences, special education, parental satisfaction

Abstract

This paper investigates the educational experiences of children and adolescents diagnosed with RYR1-related diseases, a spectrum of congenital myopathies affecting muscle function. Despite these conditions typically sparing cognitive abilities, they profoundly impact physical capabilities, presenting challenges in school environments such as participation in physical activities and social interactions. The study utilizes data collected through the RYR1-Related Disease Educational Impact and Satisfaction Survey (RDEISS) and the Behavioral and Emotional Screening System (BESS) from 49 parents of 51 children aged 3-18 years. Findings reveal prevalent classroom difficulties including handwriting issues and written expression difficulties, with 78% of children receiving special education services, primarily through Individualized Education Programs (IEPs) and Section 504 Plans. Parental satisfaction with school services is generally high (80%), despite challenges in communication and implementation. Most children exhibit normal behavioral and emotional profiles, yet some experience heightened internalizing behaviors. These insights underscore the necessity for tailored educational support and interdisciplinary collaboration to optimize educational outcomes for children with RYR1-related diseases.

Language

English

Download

Share

COinS