Children and teens with CFS have many of the same issues as other children with chronic illnesses, confounded by the fact that they have an illness which is poorly understood, often misunderstood, and too often misdiagnosed. And what do we tend to do when we don’t understand an illness? We tend to deny it, ignore it, and accuse the sufferer of malingering. My son Brian once said that “I wish I had an illness like cancer or diabetes instead that people could easily understand and that I wouldn’t have to constantly explain”.
We also have to remember that kids have a full-time job: school. This is not just where they are working on their education, but where most of their opportunities for social interaction and even extra-curricular activities occur. School-age kids need to socialize; school is usually the foundation for those social interactions. Children and teens with CFS can easily become isolated, especially if they have prolonged periods of school absence and if their friendships are based around group activities such as sports. It was important to us to let all of Brian’s friends (and their parents) know that Brian’s illness was not contagious, that he welcomed visitors, and we had an open-door policy for parents who needed a place for their kids to come hang out. To facilitate this, I made sure to serve the best snacks in town (even when Brian had no appetite).
While students with CFS may qualify for special services under the Individuals with Disabilities Education Act (IDEA) and/or Section 504 of the Rehabilitation Act, it is often difficult to obtain these services, especially if the exacerbations of the illness are inconsistent. In most cases, parents must go through the process of obtaining an Individual Educational Plan (IEP) for affected children and the school must provide reasonable accommodations including home tutoring if necessary. This process takes time and persistence. And even once a plan is in place, it may be difficult to schedule home tutoring for a child with unpredictable sleep needs and energy cycles as well as numerous doctors’ and physical therapy appointments.
The issues of how difficult this process is for the parents goes way beyond the scope of space I have for this entry! Suffice it to say that caring for a child with a chronic illness affects the entire family: emotionally, financially, and in every other possible way. If both parents are employed outside the home, flexible child-care arrangements must be made, in addition to home-schooling arrangements. This, alone, can be a tremendous hurdle.
Long before we completed the IEP process, we did a few things that were very helpful for my son throughout the course of his illness. First, when he couldn’t even read, we instituted what I called “The Tivo Curriculum”. While parenting groups and even the American Academy of Pediatrics have strongly criticized the fact that most children watch too much television, we embraced it as an extremely valuable educational tool. Using Tivo, I could enter keywords related to Brian’s academic subjects (e.g. “Ancient Greece” or “evolution”) and get lists of appropriate television programs on those topics. We also tivo’ed general education science shows such as “Myth Busters” and “Beyond Tomorrow”. Using the theory that “laughter is the best medicine”, we used the tivo curriculum to combat Brian’s eventual depression as well, taping all sorts of comedy shows (e.g. “Whose Line is It Anyway?”), funny movies, and stand-up comedians.
While we had professional home tutoring when needed, we relied most heavily on a high school student tutor. Having an older boy come to the house to work with him was easier than a “real” teacher and gave Brian some sense of social interaction as well. This was also much more cost effective (and he was a brilliant student)!
In addition to keeping as up-to-date as possible with homework and other assignments, we asked all of Brian’s teachers to send home any videos that they thought would be helpful in supplementing their curricula. Obviously, this was much more helpful in some subjects than others, but we did discover a video teaching series from The Teaching Company (www.teach12.com) which even helped with algebra and physics. We found that the best way to homeschool algebra (which I have long forgotten!) was to enroll Brian in an online distance learning course run by the Johns Hopkins Center for Talented Youth (http://cty.jhu.edu/cde/index.html); it was fortunate that Brian had already qualified for this program prior to his illness.
These were some of the strategies that worked for us. Managing Brian’s illness—and teaching Brian to adjust to a new “normal” in his life—continues to be an ongoing learning experience for our entire family. We had many advisers along the way, but no specific written plan or instructions. I hope that my writing this will help other families as they struggle to help their children and teens manage CFS or other chronic illnesses. . .and I’m always open to hearing other success strategies!