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Chapter 1: Introduction
This guide is intended to serve as a practical resource for educators who have a child with a neuromuscular disease in their school for the first time and for parents of children with neuromuscular disabilities as they participate in the educational process. It was developed to address concerns and questions raised by parents and educators as they work through the process and planning for a child's education.
We assume that most regular/mainstream classroom teachers through coursework in their teacher preparation programs have had only a cursory introduction to children with disabilities and their special education needs and will wish to know more about teaching children with disabilities. Although educators who specialize in special education have had more extensive training concerning children with a wide range of disabilities, children with muscular dystrophy or other neuromuscular diseases (NMDs) represent a very small number of those receiving special educational services. Therefore, even educators in special education programs may not be sure how to work with this group of children. With the mandate to include mainstream educators in the Individual Education Planning (IEP) team process, it is critical to provide information concerning children with disabilities to all educators.
The development of this guide, based on more than five years of research at the University of California at Davis , was made possible by a grant from the National Institute of Disabilities Rehabilitation and Research. During the information gathering and data collection process, a variety of methods was used to learn about the social, emotional, and educational experiences of children with NMD. Twenty children with NMD were observed in their classrooms and at school and eighteen teachers were interviewed about the social needs of the children with NMD in their respective classrooms. Also, over the course of four to six months, fifteen teachers participated in at least three educational consultations concerning the mainstreaming of a child with NMD into their classrooms. Adults with NMD and parents of children with NMD also participated in surveys, in-depth interviews, and focus groups.1 In addition, the authors also observed numerous other activities related to parenting and educating children with NMD, including observing parent support groups, as well as observing and participating during a summer camp for children with NMD. We have attempted to obtain a broad range of information about children with NMD, their parents, and their teachers in order to gain an understanding of both the needs and potential solutions to address these needs.
Before proceeding, it is important to remember that, first and foremost, children are individuals and must be treated as individuals. Although we will discuss several neuromuscular diseases and their influence on teaching and learning, the focus will be on addressing common needs. Each child may not fit one or more of the generalizations we will make. We do not intend to imply that all children with a given neuromuscular disease will be alike. Like all children, children with NMD vary in scholastic ability, personality, temperament, interests, physical strength, and emotional maturity. They will come from different family circumstances and different cultural groups. Therefore, this guide is just that- a guide. It will provide examples, suggestions, and useful information to be considered while planning and providing an education for a child with NMD.
Because providing equal access to educational opportunities to all children is legally required, Chapter 2 will provide a review of the laws and regulations pertaining to individuals with disabilities, particularly children with mobility impairments. Within this chapter, we will provide a brief history of the laws and regulations pertaining to the education of children with disabilities and how the laws have changed. Specifically, Section 504 of the Rehabilitation Act of 1973 and the newly reauthorized Individuals with Disabilities Education Improvement Act (IDEA) are discussed to give readers a basic understanding of major provisions that are in place to facilitate the education of children with disabilities. A very brief discussion of the Americans with Disabilities Act is also provided to give parents and teachers a basic understanding of what public accommodations are covered under the current laws outside the educational setting for children and other people with disabilities.
In Chapter 3, we will discuss the significance of developing a family-school partnership and how to build productive, collaborative relationships between school personnel and families. For example, we will outline an approach to the parent-teacher conference and how to promote effective communication within this setting. As with any child, familial involvement in the educational process tends to improve the child's progress. By encouraging all concerned parties to participate in the educational experience of the child, the child is better served.
Children have a wide range of educational needs. In Chapter 4, we will outline some academic accommodations for children with NMD and discuss potential ways of creating a more inclusive school environment. We will highlight instructional approaches in this chapter and provide an example of both an Individual Educational Plan (IEP) and a 504 Accommodation plan.
Chapter 5 will cover the social and emotional development of children that occurs within the educational and familial setting. In school, children need to make friendships and gain academic and social competence. Like all children, children with NMD have to learn social skills, deal with various forms of stress, and become comfortable with their self-image in order to gain/retain self-esteem. We will discuss how the educational process can promote the learning of skills children need to succeed socially, as well as academically, and promote a positive self-image for all children.
In Chapter 6, we have provided some basic information about a number of neuromuscular diseases. It is not necessary to know this medical information to provide a child with NMD an equal opportunity to have an equal education. This information is simply provided for individuals who wish to have some basic information about particular neuromuscular diseases. Subtitles are used to separate each NMD description so that a reader who is concerned with a single diagnosis can easily find the pertinent information. This chapter provides a brief overview of as many of the conditions as possible, but it does not cover all neuromuscular disabilities nor does it provide an in-depth discussion of any particular NMD.
While the focus of this guide is on children with NMD and how to improve their educational experience, many of the suggestions in this guide serve multiple educational purposes and will improve the educational experience of all children. If the goal of education is to provide our children with the social, emotional, and academic skills they need to have a quality life, both in the present and in the future, then our goal, as adults, should be to promote opportunities for all children to acquire these skills. The suggestions within this booklet aim to help you accomplish this goal.
1 Over 100 parents participated in surveys about their child's social development. A smaller group of five parents participated in a more in-depth interview process (on at least three occasions) regarding their child's development and educational experiences. In addition, four focus groups were conducted which included two groups of educators, one group of parents, and one group of adults with a neuromuscular disease.