When to Begin School
One of the first questions facing parents of children with BTHS is when to enroll their children in school. In the United States, most children begin their school experience in nursery school or pre-school at three or four years old. Their more formal educational career begins in kindergarten, which is typically around five years of age. Because BTHS significantly delays the growth rate, however, many parents have found that their children are behind their own age group physically, intellectually, and socially.
It stands to reason that if one of the symptoms of BTHS is growth delay then the individuals who have BTHS will be late not only in the development of weight and height but also, possibly, in the development of the neuro-developmental system[i], which controls the cognitive and learning experience of each person. Therefore, some advocates of students with BTHS strongly argue for the parents to consider enrolling their child(ren) a year late in order to compensate for the child’s developmental delays. It must be noted, however, that no strong evidence exists to suggest that all students with BTHS should be delayed in their school enrollment, but some anecdotal evidence suggests both that the question should remain open for further discussion and that each parent should consider the possibility for their child.
One parent spoke about having her son tested and finding that he was significantly below average in most cognitive categories. After adjusting the analysis of the boy’s scores for a child two years younger than his chronological age, the tester found that all of the boy’s scores easily fit into the average range. The conclusion from this one example is that if the child were delayed in his enrollment in school, his physical and intellectual development might have been similar to that of his classmates. Furthermore, almost without exception, individuals with BTHS tend to experience delayed puberty. They are generally significantly behind their peers in height and weight. As a result, they constantly struggle with the characteristic of being physically smaller than their peers. With these points in mind, some members of the BSF community have advocated that parents consider delaying school enrollment for a year to allow the child to be developmentally at the same ages as his peers
The next question that arises, “Is delaying the student is a good idea, at what age/grade level should the parents make the adjustment in their child’s education?” Should parents simply delay their child’s enrollment in kindergarten, or should they allow their child to try keeping up with his peers and have him repeat a grade level only when the time comes that he needs the extra year to catch up? In answer to this, some advocate holding the student back very early, so that the child will not have to suffer the social complication of watching his friends advance while he stays behind. At the same time, however, one argument against holding a student back for a year before beginning kindergarten is that the medical and academic challenges of BTHS with each child tend to be quite unpredictable. If a student begins his school career a year late, he has no guarantee that he will not face a year of serious academic or medical challenges later on, challenges that might hold him back from completing a year of school on time. Under these conditions, a student who is already a year older than his classmates might be faced with the need to repeat a school year and then have classmates who are a full two years younger than he.
One good piece of advice to keep in mind at this point is that despite the considerable social pressures of adolescence and despite an individual’s goals for his own academic career, a student with BTHS will simply have to complete school on his own schedule and in a manner that is most appropriate for him. The academic experience is a secondary consideration after health and safety. If an individual student faces the prospect of graduating from high school at nineteen or twenty years of age, with classmates who are eighteen years of age, his parents need to be prepared to support their child through the experience no matter what his schedule might be. A student with BTHS faces challenges unlike unimaginable to anyone else; therefore, if possible, parents should help their child(ren) attach their self-esteem to their own efforts in the context of their own lives and not in the context of their classmates.
Ultimately, the lack of patterns in the experiences of the various individuals with BTHS makes a general recommendation on the matter of when to enroll in school impossible. While some students have the challenge of neuro-developmental delays, some of which might be well-addressed by a delay in school enrollment, other students have learning difficulties that would not be eased by keeping the student back a year. Still, others have no diagnosable neuro-developmental learning difficulties at all.
[i] McCanta AC, Chang AC, Weiner K. Cardiomyopathy in a child with neutropenia and motor delay. Curr Opin Pediatr. 2008;20(5):605–607.