Social and Emotional Challenges
A child who lives with Barth syndrome (BTHS) will usually contend with significant emotional challenges as the child learns to cope with his condition. The unpredictability of the course of the symptoms makes it impossible for the individual and his family, even in times of good health, to stop being aware every day of the potentials for illness. When possible, a family would be well-served to seek some kind of support in learning how to cope in a healthy manner with these difficulties. The individual with BTHS, as well as his family, could benefit from therapy specifically designed for coping with chronic illness, and parents could benefit from counseling just for themselves.
Almost all school age individuals with BTHS must contend with being significantly smaller than their classmates, and this understandably leads to self-esteem issues in some. In one of the ugliest anecdotes gathered during the research for this handbook, a parent conveyed the story of her son’s enduring threats from classmates who picked on him because of his size and went so far as to knock him down violently enough that he ended up in the hospital. Fortunately, this boy was quickly taken out of the school system that had failed to protect him, and his self-esteem has suffered no significant damage. The potential for serious emotional harm, however, is great in school age children whose psyches are so delicate. It should go without saying that teachers and administrators must be vigilant to watch over the physical and emotional health and safety of all students. Students with disabilities or a chronic illness are more likely to be victimized by bullying than their peers[i],[ii],14. A student with BTHS especially needs many sets of sensitive and watchful eyes to protect his safety in the school setting.
The experience of living with BTHS seems to bring out many complicated and mixed developmental issues. On the one hand, those with BTHS tend to exhibit an attachment to their parents that their classmates have left behind. One mother shared a story about her 2nd grade son, who would run to her for a hug whenever she saw her in school. The other children in the class, however, who were becoming more socialized with their peers and less dependent on their parents, were uncomfortable with the boy’s enthusiasm for his mom. It is unlikely that other young children can understand how living with BTHS forges uncommonly strong bonds between parent and child. On the other hand, children who live with a life-threatening and often times life-limiting condition such as BTHS appear to have a wisdom that goes far beyond their age. They live with a host of medical conditions that can threaten their lives, and they have overcome adversities that most people cannot imagine. So, in many ways, individuals with BTHS are often both older and younger than their peers.
Falling behind in schoolwork and being unable to keep pace with classmates present emotional challenges to many children. Under normal conditions, students often feel that the pace of school is overly burdensome; they long to slow down and take time off from their studies. Students with BTHS, however, often have an extremely different experience: they find themselves unable to keep up with the workload and wish that they could do more, that they could be more like their classmates. As discussed earlier, a student with BTHS must learn to accept his own capacity for completing work. Just as a runner with severe asthma must pace himself in order to complete a marathon, a student with BTHS must make adjustments that his classmates will not have to make. One high school student observed; two days of missed school required him to work doubly hard with a quarter of the energy on the remaining days. So, even if he worked on his studies over the weekend it was simply impossible to catch up.
Parents often wonder how much and when the classmates of a student with BTHS should be told about the condition that affects their classmate. Most children can quickly recognize that their classmate is special. He is smaller, often misses more class, and does not participate in all of the activities that everyone else does. With younger children, it might not be necessary to clarify for them the details of BTHS, but they might very well ask questions about their classmate’s differences. Teachers and children should be prepared in advance for how they would like to handle these questions. In one instance, the classmates of a student with BTHS innocently misunderstood neutropenia (a deficiency of the immune system) to be related to another immune deficiency syndrome, AIDS. Ultimately, disclosing the details of BTHS to a classroom of students must be handled on a case-by-case basis, depending largely on the coping mechanisms of each individual child and the support services in the school. Some students (especially the older ones) might prefer to address their classmates directly while other students might need a teacher to explain BTHS to their classmates. Under the best circumstances, the school will have a mental health professional—social worker, guidance counselor, or psychologist—who can offer advice and possibly even facilitate a discussion in the classroom if one needs to happen.
Almost all students who have positive experiences in school have dedicated educators who advocate for them. All students, pre-Kindergarten through high school, should have at least one person in the school who has taken the responsibility to look out for their best interests. Sometimes this advocate can be a teacher, an academic advisor, a guidance counselor, a school psychologist or social worker, a Coordinator of Special Education, a dean, or even a principal. This person often fields questions from the parents, spots difficulties the student might be having, communicates with the team of teachers working with the student, directly communicates with the student, models good behavior for him, and conveys information back to the parents in a timely manner.
In addition to having an educator advocate, a student with BTHS should learn over time how to self-advocate in the school environment. As far as his own health and safety are concerned, no one knows the state of his body better than he does, and he should feel both the right and the responsibility to clarify to his teachers (and to his classmates if need be) when he is not feeling well or not feeling safe in a given situation. Even if the situation is as simple as needing a break to put his head down or needing to be excused to go to the bathroom, a student needs to be encouraged to speak up for himself.
On the educational survey, parents overwhelmingly noted their children, regardless of age, were not strong at advocating for themselves. Self-advocacy presents a significant challenge to students who have no desire to draw attention to themselves and wish, instead, to be treated no differently from their classmates, but it is a skill that parents should try to foster in their children, nevertheless. It should be stressed to a student with BTHS that his right to advocate for himself must never be abused; when he says he needs to go to the bathroom, he should never go instead to talk with friends, and when he forgets to do his homework, he should never come into school the next day and explain that he was too tired to complete his work the night before. If a student can agree to these terms and recognize that self-advocacy is both a right and a responsibility, then he might feel more comfortable speaking up for himself when he truly needs to do so.
[i] Sentenac M, Gavin A, Arnaud C, et al. Victims of bullying among students with a disability or chronic illness and their peers: a cross-national study between Ireland and France. J Adolesc Health. 2011 May;48(5):461-6.
[ii] Storch EA, Heidgerken AD, Geffken GR, et al. Bullying, regimen self-management, and metabolic control in youth with type I diabetes. J Pediatr. Jun;148(6):784-7.