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In the educational survey created in preparation for this handbook, parents were asked to rate the degree to which they felt that the burden was on them to educate their child’s school as to the nature of Barth syndrome (BTHS). Not surprisingly, nearly 100% of the respondents answered the question with a 5 out of 5, saying that the burden was fully on them to educate the school about BTHS. The next question asked parents to rate the degree of their success in educating their child’s school as to the nature of BTHS. Three quarters of the respondents rated their degree of success a 4 or 5 out of 5, a statistic that suggests that parents are already very good at communicating with educators and that educators are often open to learning about the special needs of individual children. Still, the guidelines below might offer parents some helpful tips and strategies.

A good rule for all meetings and correspondences with teachers and administrators is to keep it simple. Try to remember that teachers usually work at 110% capacity and that school administrators are often responding to many significant challenges at the same time. If parents can simplify their issues to one or two clear and essential points, they will make it easier for the school to respond positively to their concerns.

Furthermore, parents cannot be effective advocates for their child if they are perceived by the school as being a problem parent. Throughout any letter and throughout any meeting, parents should use a calm tone and remember that they are working with the school to educate their child, not against the school in an adversarial relationship. If a negative and angry relationship develops between the parents and the school, everyone will suffer, but the student will suffer the most because he will not receive the care he needs at school. Even when parents believe that the school has acted unfairly towards their son, they must try to avoid blaming the teachers or administrators directly. If teachers and administrators feel blamed for mistakes, they will dig in their heels on issues, and they will not make adjustments.

Parents should avoid making demands even when they see a course of action that the school should take with regards to their child. Educators are professionals, and it is not their job to answer directly to parents. The best course of action is for parents to know their rights, their child’s rights, and their child’s needs and then to calmly work with educators towards the best solution for the student.  

Parents should keep in mind that for the most part, teachers and administrators of schools are good people who have every desire to do what is best for their students. There are very few teachers in the world who would knowingly tolerate a situation that could hurt a child physically or emotionally. Parents should remember that teachers often have so many students in class that it is difficult to remember the needs of each and every individual child. If they are willing to help educators learn about the nature of BTHS as well as about the particular needs of their child, parents can help teachers be better teachers for their children.

Before a parent communicates with a teacher or school administrator about an incident that occurred in school, the following rule should be kept in mind: Parents do not see clearly what happens in the classroom and teachers do not see clearly what happens at home. Parents and educators can best help the student by working together to discover facts and share perspectives without blame, without demands, and without anger.

The educational survey gathered some hopeful statistics regarding how schools have responded to the needs of students with BTHS. When asked to rate how accommodating school administrators have been regarding the special needs of their children, 75% of the parents gave the administrators a 4 or 5 out of 5, and when asked how accommodating children’s teachers have been regarding the special needs of their children, over 80% of the parents answered that the teachers’ were a 4 or 5 out of 5 in making accommodations. Certainly, there are too many stories of schools that fail to care properly for children with BTHS, but these numbers suggest that by and large, parents can reasonably expect that schools will make appropriate accommodations for their children.

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