Introduction

The purpose of this information is to offer suggestions and ideas as to how families can better advocate for their children in school settings.   It is a living document which has been updated many times over since 2003.  The credit for the original research and writing, on which this project rests, goes to experts Jon Rosenshine, M.A, M.Ed., Eileen Juico, MA, M.Ed., Joan Stoner, Ed.D., Jaclyn Butera, M.S.W., C.S.W., M.Ed., Jules Spotts, Ph.D., P.C., Raghad Schroeder, O.T.R./L and Paula Geigle, PT, PhD.  The Barth Syndrome Foundation is very grateful for dedication of these professionals in devoting their time and expertise to our cause.  It is through their guidance that parents and teachers have this invaluable resource to make school a success for those who have Barth syndrome.

As part of the research for this handbook, a number of the Barth Syndrome Foundation (BSF) families were surveyed surveys about their experiences in education with their children who live with BTHS (BTHS).

Some important patterns in BTHS (BTHS) students’ experiences emerged from the research.

  • Every individual who has BTHS lives with daily fatigue. The degree of fatigue is highly variable but nevertheless debilitating
  • Each individual who has BTHS must deal with the social challenge of not only feeling different but also being perceived as different by his classmates. Almost all students who live with BTHS must have some form of adjusted academic schedule with adjusted expectations from the normal curricular guidelines. Otherwise, they simply could not be expected to keep up.

Possibly, the most significant point this handbook can make, however, is that parents need to assess each child and each educational context on a case-by-case basis. A goal of this handbook is to offer simple solutions that might be good for ALL students with BTHS, but the varied realities of the students and the varied school systems they attend makes many generalizations inaccurate. The students exhibit such a range of personal and academic strengths and weaknesses. What works for one, may not work for another. Some students have been tested and found to have significant neuro-developmental learning difficulties while others have been tested and found to be free of any diagnosable learning challenge (other than the physical trials of living with BTHS).  Furthermore, school systems—including all the variations of public and private offerings—are so different from region-to-region and indeed, from town-to-town, that there is no way to recommend for all students one solution that could be appropriate for each of them.

One way of looking at the current situation for students with BTHS is they are often square pegs being fit into round holes. BTHS manifests itself so differently from other illnesses, and indeed from individual-to-individual. Parents often simply try to find educational solutions where their children can comfortably fit. Schools need to be willing to open their programs in more flexible ways to accommodate the student with BTHS. With parents and educators working together, the individual with BTHS should find himself solving the educational challenge more and more successfully.

Section II Developmental Issues will first lay out the physical, neuro-developmental, social, and emotional issues as they have been experienced by BTHS students and then discuss some of the solutions (successful and unsuccessful) that families have tried.

Section III Protections of Students with Disabilities offers an overview of the laws that apply to students with BTHS in the Unites States. This section of the handbook will unfortunately not be very helpful for families living outside the United States. Hopefully the discussion of these laws might give some guidance for families living in other countries of the kinds of laws that they might look for in their own country.

Section IV Choices of Educational Environments addresses the different choices of educational environments families have tried as well as the successes and disappointments they have encountered.

Section V Preparing the Master File and Section VI Communicating with Schools address the strategies that parents can use to advocate successfully for their children in any educational environment. Fortunately, we can generalize because they are well-proven to be effective for parents who must deal with teachers and school administrators.

Section VII Resources provides a variety of tools that might be helpful for parents. Included is information for printed materials, websites, blogs and many other useful resources to provide with knowledge of the topics this handbook discusses.  

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