Chronic Kids

In the case of students with inflammatory bowel disease ongoing symptoms of abdominal pain, cramping, fatigue and diarrhea are common and are thus taxing for the teacher due to students being absent from, or unwell in, the classroom. Although IBD can develop at any age, it is not unusual for the disease to begin during childhood. IBD is not like the familiar diseases of childhood, such as measles and mumps with their well-known signs of rash and fever. Despite its profound effects, there are few external signals of IBD; in fact, a child can appear perfectly well, when in fact he or she is enduring quite debilitating symptoms. Few of the IBD symptoms are immediately evident to the observer - but they are real. To complicate matters, there is no typical IBD patient. The severity of the disease differs from one individual to another. One child may be mildly affected and require minimal treatment; another may be severely affected and require frequent and extensive medical intervention, including hospitalization. IBD is also quite unpredictable. It can flare up suddenly, and then be inactive for weeks, months or even years, seeming to have gone away. Diarrhea is perhaps the most embarrassing and disruptive symptom of IBD because the child needs to go to the bathroom frequently, and on short notice sometimes only because of "false urges" (CCFC, 2000). When the disease is active, the child may be extremely tired and listless. The child may have difficulty concentrating on schoolwork (CCFC, 2000). Having a bowel problem is embarrassing in our society (CCFC, 2000).

Trakas and Sanches (1992) stated that children have been represented predominantly as passive in the (chronic) sickness process. Sartain, Clarke & Heyman (2000) contend that the passive voice of children have been based on society's explicit wish to protect their welfare. By protecting children in this way we are in fact silencing them. For children with a chronic illness their perspective is particularly pertinent, as it relates to how they cope in the educational setting. Shiu (2001) wrote: "Although students with chronic illness have many individual requirements, they share in common the need for equal access to the same educational academic outcomes as their healthy peers. School may represent the only place where the chronically ill student can be viewed as a person rather than a patient" (p. 269). Children suggest that teachers should have an awareness of the impact of chronic illness (Brook & Galili, 2000). Mukherjee, Lightfoot, & Sloper, (2000) determined that children with a chronic illness have emphasized the importance of teacher knowledge about chronic illness to their success in the school. Overall, having 'a teacher who understands' emerged from children as crucial for appropriate support. (Lightfoot, Mukherjee, & Sloper, 2001). However, recent research suggests that school personnel may not be fully aware of the educational needs of chronically ill students, (thereby) placing chronically ill children at further risk for academic difficulties (Clay et al., 2004). There appears to be a disconnect as to what chronically ill children perceive as being crucial for their success at school versus the awareness that educators have about chronically ill students.