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FA at School
By Gerry Lawrence
PURPOSE: The purpose of this fact sheet is to provide information to both parents and educators concerning the impact of Friedreich's Ataxia on the education process. BACKGROUND: Friedreich's Ataxia is a genetic disorder that results in a progressive deterioration of the nervous system. It causes either a failure of muscular coordination or an irregularity of muscle action that results in abnormal body movements (ataxia). The disease usually appears between the ages of ten and fifteen. The first symptoms are usually a stumbling or "drunken walk" followed by unsteadiness and incoordination of movements of the arms and hands. Symptoms progress quite rapidly in some patients over a period of 10-1 5 years, or slowly in others over a span of 20 or more years. Individuals will eventually need a wheelchair which will provide independence of movement. Friedreich's Ataxia is a life shortening disease. However, the disease does not affect a person's ability to think and reason. LIMITATIONS: Individuals will experience difficulty in standing, walking, running and maintaining balance. Eventually a wheelchair will be required. Handwriting becomes increasingly illegible and requires considerable time and effort. Manipulative tasks become increasingly more difficult to the point where many become impossible. Fatigue is a concern and will affect performance in the classroom. EDUCATIONAL METHODS AND CONSIDERATIONS: The self image and self esteem which a handicapped student possesses is one of the critical variables for their learning. Educators and parents must keep this in mind continuously when setting educational standards and designing curriculum for students with this disease. When an individual is confined to a wheelchair and no longer capable of caring for themselves, how they feel about themselves will be the determining factor in their quality of life. HANDWRITING THE PROBLEM: The long term view is that in the future the individual will not be able to write, but will be able to use a typewriter albeit slowly. Handwriting is physically tiring and may cause hand cramps because the individual will grasp the pen or pencil very tightly in order to try to control it. Speed will be very slow. Fatigue and speed (time) will impact on the amount of work that a student can reasonably be expected to complete. Additionally, stress affects the neurological system and accentuates the problem. SOLUTIONS: Teachers can reduce written requirements to a level where they know that the concept being taught has been learned. Reinforcement of the learning is sacrificed however when the "extra" work is not required a necessary tradeoff for the student with Friedreich's Ataxia. Permit the use of one-word (or phrase) answers on work in lieu of complete sentences. Permit the circling of the correct answer on workbook pages rather than having the answer written out. Do work orally - such as spelling tests (teacher aides or peer tutors are invaluable here). Have another student take notes by using carbon paper under their own notes or use an office copier to copy a student's notes. Encourage use of a typewriter or a home computer with a word processing program. Permit parents to write (not do) students homework. Teachers will never know when the student at home is too fatigued to do their own writing and needs help. (Parents must be cautious not to do too much.) RECOMMENDATION: Do not give the student an unsatisfactory grade on papers or report cards for handwriting or neatness. They can't help how bad it is and they know it is going to get worse. THIS IS A SELF-ESTEEM ISSUE. TESTING THE PROBLEM: As discussed above, testing and writing are almost inseparable and this is the crux of the problem. Timed testing also can present a problem since stress has an impact on the neurological system and accentuates the problem. SOLUTIONS: Oral testing is an alternative, however, teachers often do not have the time available to do this - an aide can help by doing this. The key is determining whether or not learning of the tested concept has occurred. Time should not be an overriding concern when testing due to the handwriting problem or use of a typewriter. Use of a resource period to complete work is an alternative. PHYSICAL EDUCATION AND RECESS THE PROBLEM: Limitations of each individual will be different, but the one thing that can be said is that progressive deterioration is ongoing. The rate of deterioration will vary by individual. Many students do not want to participate in a PE program because it is so frustrating to them and can be a self esteem deflating experience. SOLUTIONS: Participation in the "normal" PE program is desirable. However, when a student feels strongly about not participating, it is usually best not to force participation. If the student says they can't do an exercise or activity, that should be respected. This comes back to the most important consideration--the student's self esteem. There is considerable risk that the student will have feelings of, "I'm the worst or I'm no good or nobody wants me on their team". Situations should be structured to have the student be a winner. Teachers must learn the student's physical abilities and look for alternatives. For instance, when the class is having relay races, ask a student with Friedreich's Ataxia to be the timekeeper. It may be necessary to provide students taking PE additional time to change. For those not taking PE, consideration should be given to replacing it with study hall. This helps since it always takes more time to complete homework. A study hall can also be a time that can be used to take tests or complete tests. COUNSELING THE PROBLEM: Students with handicaps face many more challenges both academically and socially than others must face. There is a need for them to have an outlet, someone they can go to at school and know that they will be listened to and understood. Classroom teachers often do not have the time and often lack the training to fulfill this role. SOLUTIONS: Establish the relationship early between the school counselor and the student. What the student needs more than anything else here is a good friend they know cares about them and is available and willing to listen. If the counselor doesn't fill this role, there may be a teacher that will. GENERAL ASSISTANCE THE PROBLEMS: Cafeteria assistance may be needed to carry the tray from the food line to a table. Assistance may be needed at the end of the day getting to a school bus or a parents car. Students with handicaps frequently don't like to ask for help and if it is not provided for them, they remain quiet about their need. SOLUTIONS: Friends often will provide the assistance needed with lunch trays. However, when the student is new in a school having just moved there or has just changed to a new school, teachers need to help by having a lunch room monitor help or asking for a student volunteer to help. At the end of the school day, students are usually in a mad rush to leave. This poses a problem for a student with Friedreich's Ataxia who is still able to walk because they are unsteady and frequently fall. The pushing and bumping in crowds presents a significant problem. Releasing the student from class a few minutes early to get to their bus or a parent's car can preclude this problem. MISCELLANEOUS: Students with balance problems have difficulty carrying things because they use their arms to maintain their balance much as a circus high wire walker does. Carrying books back and forth to school is a problem because it impacts on the ability to maintain balance. This can even be seen when students have their books in a backpack. When the school can issue two sets of books, one for use at school and the other for use at home, this concern can be eliminated. Whenever a teacher can provide the student a written copy of board work and save that writing effort it is desirable. Use of a Xerox machine to accomplish this is probably CONCLUSION There are many things that students and teachers can do to help a student with Friedreich's Ataxia cope with the challenges of this disease. Having sensitivity to the person's self image and self esteem is probably the greatest guide to providing assistance. Teachers, administrators and other students rarely consider what it would be like to live with the knowledge they have a disease which means that at some point in the future they will not be able to walk or even perform such menial tasks as button the buttons on their shirt. HELP YOUR STUDENT BE A WINNER by providing a copy of this fact sheet to their teachers and counselors and do it yourself every year. We only remember about 20% of what we hear, therefore, having these suggestions in writing is always appreciated by teachers. Prepared by Gerry Lawrence, former President of the South Texas Chapter, National Ataxia Foundation, who has a Masters Degree in Education from Butler University and is the father of two sons with Friedreich's Ataxia.
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