Suggestions and Advice to Educators

Be Proactive in Teaching Other Educators About Barth syndrome (BTHS). In almost all parents’ experiences, the responsibility has been solely on them to educate their child’s school about the nature of BTHS. Certainly, they are uniquely qualified to do so as they understand BTHS and its effects on their child better than anyone else.

Teachers and school administrators, however, sometimes see parents as unreliable sources of information. Parents of boys with BTHS are especially susceptible to being perceived by teachers as overly protective. From their points of view, teachers often see a boy who needs to be less dependent on his mother and more socialized to his peers. He needs to get out and eat more and exercise more! They do not understand the life-threatening conditions of the boy’s weakened heart, of his weakened immune system, and of his extreme fatigue, so they see the parents as unreasonable in their demands for accommodations for their child.

These miscommunications create stress for the parents, for the teachers, and most of all for the students themselves. If parents have allies in the school committed to educating others by validating the seriousness of BTHS, the student will be able to face his considerable challenges without being caught between contradictory expectations.

Assemble a Team. One of the best ways to ensure a student with BTHS is well cared for in the academic setting is to put together a team of educators who are dedicated to helping him negotiate the challenges of school. Depending on the nature of the school and the resources available, this team might consist of the following people:

  • the student’s advisor, advocate, or guidance counselor
  • a learning specialist
  • a special education coordinator
  • a mental health specialist
  • the school nurse
  • all teachers working directly with the student
  • the dean of students or the administrator directly responsible for the student’s academic experience

In a public school in the United States or Canada, such a group of people will likely exist already in the team that writes the student’s Individualized Education Plan (IEP), but this team should be ready to meet together on a more informal basis than the IEP meetings. 

One of the purposes of this team is to share information with each other. In order to respond quickly to the needs of a student with BTHS, teachers need to have up-to-date information about the student’s physical health, emotional well-being, and academic developments. Teachers often need to be coached about when and how to accommodate the special needs of a student whose disabilities can seem vague and confusing to someone not intimately aware of how BTHS manifests itself.

For instance, a particularly complicated academic situation discussed during a Barth Syndrome Foundation Conference concerned a young student who suffers from both BTHS and ADHD. The hyperactivity makes his classroom experience a challenge for himself, his classmates, and his teacher, but the student also suffers from the fatigue and exhaustion that comes when his cells fail to produce the energy he needs to stay focused or even to keep his head up at times. The teacher was reasonably baffled by the student’s claims to be too exhausted to work—shortly after he was bouncing off the walls. Because she did not fully understand his condition, she regularly refused to make accommodations for a student who was suffering under a collection of physical conditions that were beyond his control.

The health of an individual with BTHS can change dramatically, compromising the regularity of his education. At these times, the team needs to assemble to discuss how best to approach his new situation. Some of the most emotionally traumatic moments for those with BTHS come when they finally return to school after a period in hospital or after being homebound only to be handed a test that they had missed while they were away. While a teacher assumes that the student could have been studying while away from school, he feels defeated at the very moment that he has overcome a serious infection, or heart failure, or any one of the medical conditions that threatened him.

If naming and bringing together a team around a student with BTHS is beyond the capacity of a school, at the very least, the administration might assign at least one educator to be the student’s advocate. This person should be charged with the responsibility to field questions from the parents, spot difficulties the student might be having, communicate with the teachers working with the student, communicate directly with the student, and convey information back to the parents in a timely manner.

Keep neurodevelopmental testing updated. Because an individual with BTHS can suffer from general growth delay, he often suffers from neurodevelopmental delays as well as the more obvious physical developmental delays. In order to best serve his needs, his school should carefully monitor his academic development.

It should be noted here that the vast majority of students with BTHS have Individualized Educational Plans if they are in the United States or the Canadian public-school systems or Statements of Special Needs if they are in the United Kingdom.  Whether a student qualifies for this protection due to a specific learning disability or due to “Other Health Impairment,” this formal protection of the student’s rights is extraordinarily useful to the student and to his teachers in helping the student negotiate his education from kindergarten through to the end of high school.

Help Parents Keep a Master File. The Barth Syndrome Foundation has advised parents to keep a master file at home with all of the records, letters, evaluations, test results, and reports that pertain to their child’s education. This master file will help parents communicate effectively and objectively with their child’s school. The parents and the school can best work together to find solutions for a child with disabilities when they share information and when they base their decisions as much as possible on objective facts. A school can help parents keep this file by providing a copy of the student’s complete school file and by making sure that the parents have updated copies of all documents.

Think Creatively When Finding Solutions. Some of the most successful educational solutions for students with BTHS have been found way outside the box of the traditional educational experience. 

  • Some students have been enrolled in schools but have their schedules amended to allow them to be in school only half days.
  • One school paid for home tutoring but allowed the student to audit some classes at school so he could maintain his friendships and social development.
  • One high school student found a balance by taking some classes at school, receiving home tutoring for another class, and rounding out his curriculum online

Most importantly, a student with BTHS will have to approach his education on his own terms and at his own pace. For all students, health and safety are of paramount importance, but for a student with BTHS, health and safety affect educational choices far more than for the vast majority of his classmates.

Consider sending a School Representative to the Barth Syndrome Foundation (BSF) Biennial International Conference where families, doctors, scientists, and educators come together to:

  • share information necessary in guiding the search for treatments and a cure for BTHS
  • educate and support physicians
  • create a caring and informed community for affected families

By sending a teacher, an advisor, or a school nurse to this conference, a school will have an expert who can most effectively lead the team of teachers and administrators in caring for and educating their student with BTHS.

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