How Lyme disease takes a toll on children’s schooling
By Sandra Berenbaum
Lyme disease can drastically impact a child’s education. One of the biggest problems involves sleep—both too much and too little. Some children may sleep many more hours than is common for others their age. But from what I have seen, for most young Lyme patients it is just the opposite. They cannot get enough sleep and what little they get is of poor quality.
Some children completely reverse their circadian rhythms. They stay awake all night and sleep during the day. Those around them may see this as a behavior problem and assume the child is staying awake to defy the parent. But for the great majority of children with Lyme, the sleep problems are, in fact, caused by the disease.
Such sleep problems can contribute to profound fatigue. Blogger Jennifer Crystal, who writes extensively about the experience of having Lyme disease, describes it this way:
The fatigue of tick-borne diseases…is a crippling flu-like exhaustion, one that leaves muscles not sore but literally unable to function; one that makes the body feel shackled to the bed; one that makes the effort of lifting one’s head off the pillow seem like a Herculean feat. There were times, at my lowest point of illness, when I …felt too tired to breathe.
Pain and other symptoms
Another symptom that interferes with education is pain. Children with Lyme may have migraine-like headaches, joint pain or gastrointestinal disturbances. One of my young clients would spend up to two hours in the bathroom at a stretch, crying in agony, as her mother tried to comfort her. This unpredictable symptom made it impossible for this child to attend school. She needed homebound instruction until, with proper medical treatment, this problem cleared up.
Sensitivity to light and sound makes school intolerable for some students with Lyme. The noise of children in the halls and cafeteria may be overwhelming. For some, even the sound of a pencil scratching on a paper is too much. Fluorescent lighting in the classroom can cause burning eyes, blurred vision, or severe headaches. Furthermore, children whose brains have been affected by Lyme disease may find it extremely hard to process information and organize their time. They may have problems involving short-term memory and word-finding.
In my practice, I have not met a child with Lyme who wanted to get out of going to school when healthy enough to do so. The children I see want to attend school and to connect with their peers. Before getting sick, some had been active in sports, music, or drama. Even the quiet or shy children had found their circle of friends and their place in school.
The picture changes when Lyme symptoms emerge. At first, there might be subtle backsliding, as school attendance and performance gradually decline. After the child has been diagnosed, the parents may realize that problems at school are due to the disease and not her failure to try her best.
Unfortunately, many schools do not understand the link between the illness and academic performance. It can be useful to help educate district personnel about Lyme disease, to minimize the level of misunderstanding between the school and the family.
Addressing school-related problems
Here are some of the school-related problems that children with Lyme may experience:
- Attendance—Sometimes the child is too ill to be in class. Other times, there are medical appointments that cannot be scheduled after school. Some schools have firm attendance and lateness policies that don’t make allowances for such circumstances. For children with a documented medical need to be out of school, it is important to establish a 504 plan or an Individualized Education Program (IEP) that includes a waiver of the attendance and tardiness policies.
- Length of school day—The regular academic day is too long for many children with Lyme. Some schools may agree to a shortened day but want the child to start early in the morning when the other students arrive. That rarely works for students with the sleep problems that are typical of Lyme. They often wake up later and take longer to get ready. A shortened day, starting late, may help them stay in school and better absorb the material.
- Bathroom access—Children with gastrointestinal symptoms must be free to go to the bathroom as needed. They should not have to ask the teacher’s permission first. This meets a physical need and avoids embarrassing the student. Some schools will easily provide this kind of support for children who need it. They may even allow the child to use the bathroom in the nurse’s office to avoid the more public student facilities.
- Access to a quiet room—Students suffering from sensory overload or headaches need a chance to escape to a quiet place. This might be the nurse’s office or a room off of the teacher’s lounge. Taking a break like this may protect the rest of the day and avoid the need for the child to leave school early or go on homebound instruction.
No two cases of Lyme are exactly alike, with identical symptoms and challenges. There is no blueprint for educating a child with Lyme disease. Complex problems call for complex solutions.
Excerpted from “When Your Child Has Lyme Disease: A Parent’s Survival Guide,” by Sandra K. Berenbaum, LCSW, and Dorothy Kupcha Leland. Published by Lyme Literate Press. Berenbaum has a psychotherapy practice that focuses exclusively on Lyme disease patients and their families. She is a member of ILADS and advises a number of Lyme patient advocacy groups. Her website is LymeFamilies.com.