Some Neurodevelopmental Challenges Faced by Students
Despite the lack of consistency in the intellectual experiences of students with Barth syndrome (BTHS), schools would do well to prepare for the kinds of neurodevelopmental and learning issues their student(s) with BTHS might face. Some of the issues could be direct results of the symptoms of BTHS, and some of the issues might be caused by the medications the students have to take.
Regardless of the causes of the academic challenges facing students with BTHS, a school would do well to have a student with BTHS tested on a reasonably regular basis in order to monitor his learning style.
Students with BTHS often struggle to stay focused in classes when there is much movement and noise to distract them. Some teachers have noticed dramatic improvements in learning when students go from distracting classrooms to one-on-one lessons. Staying on task is another commonly noted challenge for students. Teachers should keep students with BTHS close to the front of the room where they can keep an eye on their progress on assignments and where the distractions are reduced.
A significant percentage of individuals with BTHS struggle with short-and long-term memory issues. Such problems might very well be a consequence of fatigue, but another possible cause for memory difficulties could be found in the effects of the medications that many students with BTHS take. Schools can always consult with a student’s parents or doctors to learn about the possible side effects of medications on an individual’s memory and other cognitive functions. Ultimately, however, there are no clear answers yet for the cause of memory difficulties in individuals with BTHS.
Reading comprehension and retention are also noted by some parents as challenges for their children. Again, for many students, challenges in reading might be caused more by fatigue than by discernible learning difficulties, but some students do seem to have weaknesses in the verbal area. In the United States, once students with BTHS are identified as other health impaired, they are able to receive special education services, and this allows them to receive recorded texts through mobile apps such as Learning Ally.
Listening to readings through an app, as opposed to reading the texts directly, usually takes longer, but easily fatigued students might expend less energy in getting the work done. Each student needs to explore his options and choose the method of reading or listening to the text that best the student’s style.
Mathematics is an area of difficulty for many students with Barth syndrome (BTHS), but very little data exist to explain why this is. Possibly, it stands to reason that students with inconsistent attendance and with focus and short-term memory difficulties will struggle with the logical sequencing necessary in mathematical operations.
Dr. Michele Mazzocco began investigating cognition patterns in BTHS in 2000. She published a preliminary paper in 2001[i] that discussed the first evidence ever found that boys with BTHS might share some learning patterns as a result of BTHS. Further research demonstrated those with BTHS to have age appropriate cognition, vocabulary skills, and reading skills[ii].
Dr. Mazzocco and her team characterized those with BTHS to have below-average performance in mathematics and selective difficulties in visuo-spatial skills that is not linked to impaired motor functioning from myopathy. Math difficulties are not evident in preschool but do emerge in most during kindergarten[iii]. In the Barth Syndrome Registry study, twenty-two of forty-six males older than age seven years reported some form of “learning disability”[iv]. An estimated 33% of those diagnosed with BTHS require some type of educational accommodations[v].
[i] Mazzocco MM, Kelley RI. Preliminary evidence for cognitive phenotype in Barth syndrome. Am J Med Genet, 2001 Sep 1;102(4):372-8.
[ii] Mazzocco MM, Henry AE, Kelley RI. Barth syndrome is associated with a cognitive phenotype. J Dev Behav Pediatr. 2007;28(1):22–30.
[iii] Raches D, Mazzocco MM. Emergence and nature of mathematical difficulties in young children with Barth syndrome. J Dev Behav Pediatr. 2012;33(4):328–335.
[iv] Roberts AE, Nixon C, Steward CG, et al. The Barth Syndrome Registry: Distinguishing disease characteristics and growth data from a longitudinal study. Am J Med Genet A. 2012;158A(11):2726–2732.
[v] Clarke SL, Bowron A, Gonzalez IL, et al. Barth syndrome. J Rare Disord. 2013;8(23):1–17