Ridgefield, CT – Town Meeting
Ridgefield, CT – Town Meeting
When children develop chronic Lyme, they are not only fighting disease, but they and their parents must also fight to get a proper education. Numerous school districts are unaware of the myriad of problems relating to LD, particularly those interfering with the learning process. Therefore, instead of receiving appropriate educational support programs and services, children are often ignored, punished, or ostracized. Lyme is often not considered a serious disease.
Students with Lyme may be classified as other health impaired under an IEP or placed under a 504 plan, although accommodations can be made without either one. For example, because Lyme students may be easily distracted the teacher can move the student to the front of the room or make arrangements for the student to take the test outside of the classroom to reduce distractions.
Teachers must utilize alternative instruction strategies such as testing orally, since children with Lyme may have difficulty reading the question, comprehending it and writing an answer. Breaking up periods of instruction, taping books and lectures, and allowing extra time for assignments can be other strategies. Students’ physical needs such as light and sound sensitivity and the need to get up and move around may have to be addressed.
Sometimes, children exhibit problems associated with Lyme disease that go unrecognized as such by districts, especially behavioral and mood changes. At times, children may be improperly classified, labeled NI (neurologically impaired) or ED (emotionally disturbed) when perhaps a classification including ‘other health impaired” might be more appropriate to address the medical problems triggering the neurologic and/or psychiatric problems that stem from Lyme.
Children may be identified with ADD, attention deficit disorder, medicated for those symptoms, and no cause is ever sought. According to Dr Brian Fallon, Columbia University Associate Professor of Psychiatry and Director of the Lyme Disease Program of the NY Psychiatric Institute, a child who manifests primarily with inattention and fatigue as opposed to hyperactivity should probably be evaluated for Lyme disease. Districts need to carefully evaluate any child who has a history of Lyme and is experiencing neurologic, psychiatric, and attention deficit problems to ensure that the problems are not organically produced by Lyme disease, since the bacteria causing Lyme disease can enter the central nervous system less than days after a tick bite.
Suicide attempts can and do occur in children with Lyme. I heard of one case where a teen left a note indicating that no one including her school understood her problems with Lyme. Another involved a teen who was being treated for Lyme until a psychiatrist told him it was all in his head. He stopped the meds, and due to intense pain from the disease, he killed himself.
Recurrent short-term memory, concentration and recall problems, mental confusion, and exhibition of dyslexic type symptoms are not uncommon and interfere with the learning process. A number of peer-reviewed articles by Dr. Fallon address these issues in school-aged children and can be used to reinforce the learning problems associated with Lyme. One Fallon study supported by LDA funding entitled “The Underdiagnosis of Neuropsychiatric Lyme Disease in Children & Adults” documents an improvement of 22 points in IQ in a 16 year old after IV treatment for Lyme disease.
Fluctuations in symptoms present another problem for schools. Lyme symptoms can vary from day to day and even hour to hour. Children with LD on long term home instruction may need to have a school program which enables them to come to school when feeling well and receive home instruction when they are not. Sometimes they may need a hybrid, school in the morning, HI in the afternoon or weekends. Serious sleep disturbances may cause them to oversleep in the morning, necessitating an afternoon schedule. Flexibility must be written into the IEP or 504 plan.
Executive functioning may be impaired and the child may have difficulty organizing his/her day or life. Parents are sometimes the first ones to recognize this problem. They need to work with the school and should not be intimidated by district officials. I have seen children who have missed years of school and been able to graduate with their peers, and I have seen others who have fallen behind and not finished. The difference is usually the parent’s involvement. Schools often will cooperate after they are educated and understand the severity of the problem.
Below are a few of many cases of students with Lyme disease in which I have been directly involved.
Student X had been on home instruction all during high school. The district forced him to take Spanish I three times. He completed the course the first two times but was too sick to take the final exam each time. He balked at retaking the course the third time. He was never able to fully complete his other courses for the same reason. He was never told his course work could carry over until he was well enough to finish each course. At the end of senior year, he had only 11 credits toward graduation. His IEP was never fully implemented. He had however, passed a state mandated graduation test. The district was refusing to allow him to graduate. The parents called me in a few months before graduation.
I pointed out to the district and its attorney the improper handling of his educational program. Since he was classified, he should have been permitted to continue each course until he finished it, not retake it because he was sick and missed an exam or test. He was not only permitted to graduate but also the district agreed to pay for 2 years at a community college in lieu of the parents taking costly legal action against the district, a case which the district stood a good chance of losing because of their improper handling of his education. He has subsequently graduated from community college, has a good job, and recently celebrated his second wedding anniversary.
Student Y scored almost perfect on his SAT’s. His IQ exceeded 160. He was on home instruction throughout high school. The district refused to allow him to take Advanced Placement courses. The department heads argued that students on home instruction did not have a right to take these courses, the content would somehow be diluted. They felt the student was getting a break being on home instruction. Once, when Y was bedridden, the district requested that he report to school each day that he felt sick so that the school nurse could determine if he were capable of coming to school that day.
I told Y’s district it was unthinkable that an individual with his intellectual ability would not be permitted to take AP courses. Besides the fact the denial was not legal, it would be an extreme embarrassment to the district since Y was now a National Merit Scholar! He not only took his AP courses at home, but when I stopped by one day, I found him teaching one of his teachers. He graduated Phi Beta Kappa from Drew and is enrolled at Dartmouth graduate school where he taught as well as studied.
Student Z was an honor student out of school four years–three of them spent in intense seizure activity. Home instruction was often cancelled with the teacher at the door, because Z was in a seizure. She could not read more than a paragraph for 3 years. She had no contact with peers for 4 years. The district refused to allow her to take honors courses because she was on home instruction and refused AP courses, because they could not fathom why a sick person would want to take them. A teacher once called her at home and insinuated she might be cheating because her grades were so good on home instruction. The school refused to allow her to take two math classes in one year to try and makeup a missed course, an option available to all in-school students. She was refused admittance to the national honor society although ranked 5th in her class, because she had no after school activities.
I pointed out to the district they had no legal basis to make those decisions. Z took honors courses at home, including honors biology on a picnic table in her back yard, took three AP courses, and attending school a few hours a day her last two years of high school, she doubled her math courses senior year. She graduated on time with an A average, attended Johns Hopkins University, withdrew for a semester because of seizures, completed junior year with an IV in her arm, and graduated on time, Phi Beta Kappa, and with honors. She now heads production for a major peer review medical journal in NY.
Side note, after her HS graduation, the district agreed to review and change the honor society regulations to permit a classified student on home instruction to be inducted into the honor society with a waiver of that one provision about after school activities. The district did say however, that just because the regulation was changed, we should not think the selection committee would ever vote anyone like that in.
These students are Lyme success stories. Sadly, for each one of them, there are dozens more who have neither a parent nor an advocate to fight for them. While they are struggling for their very lives, society should be throwing them life preservers instead of holding their heads under water and forcing them to struggle harder.
Our children are sick. They can’t get diagnosed. They can’t get treated. They can’t get appropriate education. They have asked for little and society has given them nothing in return. We may not yet be able to save their bodies, but with continuing education and cooperation of officials and school districts, maybe we can save their minds. Thank you.
INTRODUCTION KIRBY STAFFORD
The next speaker is a medical-veterinary entomologist whose research focuses on the ecology & control of the deer tick that transmits Lyme and other tick-borne diseases. He works in a community-based project with Wesport Weston Health District and the State Department of Health and has numerous publications on tick-borne diseases in peer-reviewed journals. Welcome Dr Kirby Stafford from the Connecticut Agricultural Experimental Station.
THANKS KIRBY STAFFORD
INTRODUCTION OF SUPPORT GROUPS
Although Lyme disease has been recognized for over 25 years now, patients continue to experience problems with diagnosis and treatment. Fortunately, we have many caring individuals who give freely of their time to try and help those who have Lyme disease but have no place to turn for help. The following two groups are to be commended for their efforts in this area.
Yvonne Bokhour (Bow Coor) Kosakow has been the administrator of the Wilton Lyme Disease Support Groups, which provide both teenagers and adults with the opportunity to exchange information and comfort. She is also on the Board of Directors of the National Research Fund for Tick-Borne Diseases, formerly Wilton Lyme Disease Task Force. She recently has had a Sarah Lawrence graduate project, assessing the risk of Lyme disease to migrant workers, accepted for presentation by the Academy of Medicine’s Conference on Urban Health.
INTRODUCTION OF KIM HARRISON/NEWTOWN Kim Harrison is the co-president of the Newtown Lyme Disease Task Force. She has a M.S. in Elementary Education and is currently a stay at home mom with her 2 children, one a chronic Lyme sufferer. The Task Force was formed in April 2000 in response to the growing number of people in Newtown suffering from tick-borne diseases. The mission of the task force is to promote education and understanding of tick-borne diseases in CT.
INTRODUCTION ADAM LESSLER
Adam Lessler, Columbia University, assistant to Dr Brian Fallon. The NIH awarded Columbia $4.7 for a long term treatment study for Lyme disease. Patient community excited about the study.
Adam is here to tell you about the study and how you can participate.
THANKS ADAM ****************************************************************************** QUESTION & ANSWER
Now we will have question and answers from the cards you have submitted.
THANKS TO ALL ORGANIZERS, SPEAKERS & ATTENDEES