Chronic Fatigue Syndrome Advisory Committee (CFSAC)

Sixth Meeting

I introduce myself as Anthony’s mom because he is why I am here. I have been a paraprofessional for several years in special education, working with children with mild or moderate mental retardation, autism, learning disabilities, and emotional disturbances. I am the core leader of the accessibility ministry at our church for all disabilities. I am trained as a special education coach, which empowers parents to advocate for their own children. I am a member of Partners in Policymaking and I am on the Special Education Advisory Committee for our school system.

I am an expert in “Anthonyology.” As adults, we know how difficult it is when we are not capable of going to work because we are sick. However, our children are expected to do their job despite debilitating and devastating effects of CFS. Children are subjected to judgment, ridicule, and humiliation by uninformed educational staff or those who have just enough information to make an incorrect assumption, such as the child is not showing any effort or they are just depressed. These are the people who are responsible for the evaluations and observations that determine a child’s eligibility to access services from the school system.

Parents must navigate the medical kingdom and must also vigorously battle through the special education maze. No Child Left Behind includes our children with CFS, but they are being left behind. Educators are unsure how to apply special education criteria to a child with CFS. Since CFS covers such a vast spectrum of symptoms, educators become overwhelmed when trying to construct educational plans. They fail to realize that just because something has never been done, it does not mean that it cannot be done. For example, homebound for more than five hours per week is possible and electives on foreign languages can be taught on homebound. School systems expect physicians to make recommendations for the child’s educational plans. However, physicians are not always aware of the most up-to-date strategies or related services, such as occupational therapy, physical therapy, speech language pathology, or visual aids that are available to the school systems.

After working for several years in special education, I was surprised to learn that I would one day have to apply the strategies that I had learned to my own son. I thought that it would go smoothly once my son was diagnosed. However, the process did not go smoothly. I was involved in a two-year battle that included the Virginia Department of Education. I knew what documentation to keep and I knew how to fight the system, because I was trained by that system. What happens to the other children?

I was distressed that there were not a lot of modifications available in relation to pediatric CFS. As a result, I developed an educational plan specific to my son’s need and I was vigilant over exemplimentation. I am happy to report that my son’s lowest cumulative grade as a senior is 3.75. Seeing that success, I developed a workshop for educators to help other children. The last half hour of the workshop is devoted to brainstorming in groups over case studies and presenting recommendations. These recommendations are given to the parents, who in turn can present them to the child committee.

I have seen these children realize educational success. I want the same available to all of our children with CFS. I have driven people crazy at my son’s school and other schools by asking “what if” and “why not.” If the answer was no, I would ask for it in writing. This approach gets results.

Some of my suggestions would be that educational workshops should focus more broadly on the entire school staff (including bus drivers, school psychologists, school nurses, librarians, and special education supervisors), with hands-on application of learned materials. The second recommendation is to inform parents and the Department of Education about CFS in children, their educational needs, how to level the academic playing field. The third recommendation is to develop an outline for parents on how the IDIEA applies to children with CFS.