When you look at the faces of CFS, I want you to see the children. I am a parent. I understand school problems because I used to teach. I understand CFS because I have the illness. And as much as I would like this all to pass me by, I also have a child with chronic fatigue syndrome. He has recovered, but I have not lost the fear of his relapse into a lifeless humorless body plopped in front of a soundless television. Having received weekly inquiries from parents full of questions — about treatments, medical research, school program, how to deal with their child — I've learned that each situation is unique. I want to share my insights into seven issues common to most families coping with CFS.

    I know it's difficult, but a shift must be made from thinking "sick children" to "children who are sick." Given the disease's variable nature and uncertain acceptance, this is hard. Even intact families, as well as those already dealing with internal stress, are apt to spiral toward destruction while try to get help for the kid. The family system begins to operate around illness because there are many obstacles to overcome. The kid has a new and unpleasant symptom; the guidance counselor called, again; and a bill just arrived from the doctor's office because the insurance company won't pay. Meanwhile, the kid, who is sick, begins to shut down, being the object of everyone's inability to resume "normal" family life. For the kid, the development of an identity separate from the madness is just about impossible. Because they are children, kids will try to protect themselves from the illness with various behaviors, from wallowing in being sick to totally divorcing from the illness.

 
TAKING CARE OF YOUR CHILD IS NOT ABUSIVE BEHAVIOR!

    Those parents who advocate for their children, making themselves highly visible in the school district and the medical community, are sincerely looking for help. Yet, the CFS parents I deal with have run a gantlet of whispering and direction accusation that the child's illness is caused by the family. After years of teaching in an alternative program with at-risk kids, I know that most abusive parents keep a low profile, because they are ashamed and need to hide family secrets. The high-profile parents of kids with CFS present a challenge to the school district. How convenient, if understandable, for school personnel to simply label the problem as "family dynamics out of their control," so it's easy to dismiss. In the end, this says more about the school system than about the family.

 
COUNSELING IS ESSENTIAL

    Although counseling won't make the kid physically better, it's still important. All parents need help with how to draw lines within the family system, and then redraw the lines as illness affects the entire family. Parents are very sad about their inability to fix their children. The child that once was is gone, replaced by ... a shadow of someone the parent doesn't know. Parents are angry at the systems that don't seem to work, and they're guilt about what they could have done differently. In trying to help, a parent develops an inordinate amount of sympathy for the child. I believe this must be tempered, because too much sympathy contributes to the child's low self-esteem. Ultimately, the kid's life view will be shaped by how the family deals with the illness. In my estimation, the emphasis must be on what works, on what a kid with CFS can do, and not on what has been lost. It's hard, because health-care professionals don't often understand CFS, so they believe they can simply fix the illness by either "fixing the family" or "fixing" perceived deficits in "the kid's personality." Seek out counselors who know both CFS and rehabilitation. Counseling can help a CFS family get on with the business of life.

    My most effective work as an advocate is when I build my network with interest groups, helping parents stay away from battles with school personnel about what "has" to be provided by law. I've learned that school districts are autonomous and that the laws are meaningless, particularly in the short time frame of one child's education. By the time a parent has called me in to intervene, a battle is raging between home and school. The school psychologist, nurse, or guidance counselor has "discovered" some family dysfunction, or a diagnosis of "school phobia" or "depression" has been made. The parents, feeling powerless, get mean and protective, fulfilling the school's expectation that the parent is enabling the kid's illness. Things spiral out of control and the kid gets lost somewhere in the shuffle.

FOCUS ON WHAT CAN BE DONE, NOT THE DIVISIONS

    I no longer like the word "advocate" because it sounds one-sided, as if my job is to stand up for the kid and family. Perhaps these battle scars have altered my view: I see my job as helping to reconcile the differences between parents and responsible school personnel. This doesn't mean the kid must settle for less. It does mean turning the focus to what can be done, away from the division between "good family, bad school." It's crucial to find the right people within the district to deal with. I have run into a few "Peter Principle" administrators—little kings in littler kingdoms, since they lack the ability to deal with real educational issues. I've encountered my share of teachers who would be poor with any sort of kids, as well as narrow-minded, plain damned ignorant folks. One can waste enormous energy battling these people, and it's like hitting a brick wall: a useless venture unless you like pain.

    Being involved with these families is one of the most difficult things I have encountered in my life. I taught for ten years in an at-risk program where the majority of kids were physically and/or sexually abused. During that time I heard the most gruesome stories anyone could imagine, but, the perpetrators could be identified. The kids could dump their guilt and anger, and then begin the healing process. Kids with CFS feel like abused children to me. They feel guilty about not being able to be a kid, not being able to participate in all of the things that make parents proud. They are terribly angry, but there is no perpetrator. Their anger can be vented at those they love, or more often, sizzles within.

    Creativity about what can be provided helps. Often school people don't use all the available resources. There are many many valid ways for a kid to acquire the almighty credit. I think a kid needs to be in school a consistent amount of time each day, even if it is only an hour or two. This helps the kid develop an important coping skill: a certain amount of resilience. However, kids who are in the middle of a huge viral storm won't be able to attend, and safety nets need to be in place when this happens. School success for kids with CFS is largely dependent on coordination of the educational program, and collaboration with the right school district personnel.