Friedreich's Ataxia Parents Group
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Students With Friedreich's
Ataxia by Gerry Lawrence Links: Students With Friedreich's Ataxia -- a paper written by Gerry Lawrence who has a Masters Degree in Education and is the father of two sons with FA. This easy to understand paper is excellent to give to school teachers and staff. It can now be read and printed from our website. Telling Your Child's Classmates About Friedreich's Ataxia as prepared by Raychel Bartek for presentation to Keith's 6th grade classmates ImRaychel@yahoo.com or scud@erols.com How many of you have attended school with Keith since kindergarten? (raise of hands) You are now starting your 7th and final year at Wakefield Forest Elementary. Many of you were in Ms. Buhr-Smith's 3rd grade class with Keith. Towards the end of 3rd grade, Keith began having trouble with handwriting and getting his assignments completed. Keith's parents, teachers and school specialists met throughout 4th and 5th grade but could not determine what was wrong. By the end of 5th grade Keith was having so much trouble writing that he would take his left hand and hold ít down on his right hand just to keep his pencil steady enough to write. That was taking Keith a long time. Those achievement tests were really tough because of the tiny circles you have to fill in. During spring break in 5th grade, Keith flew back early from his trip to Louisiana to be examined by a doctor called a pediatric neurologist at Children's Hospital in Washington, DC. It was determined that Keith had a rare genetic disorder called Friedreich's Ataxia. (NOTE: Write it on the board or an overhead) Friedreich's Ataxia is so rare that it is called an orphan illness. Only 1 in 50,000 people in the US have this disorder. The enrollment in our county school system here in Fairfax County, Virginia, is about 150,000. That means there could be 2 other students who may have Friedreich's Ataxia in the 12th largest school system in the United States. That is rare! I know many of you probably are starting to think of questions you'd like to ask about Keith and Friedreich's Ataxia. Here are some questions and answers that you may be thinking about asking: Can I catch Friedreich's Ataxia from Keith just like I can catch a cold from another person? No. Keith inherited this disorder in the same way you inherit blue or brown eyes or brown, blonde or red hair. He can not pass it on to you. Can Keith take any medication to cure Friedreich's Ataxia? No. There is no pill that will cure Keith. What will happen to Keith? Over the next ten years Keith will gradually lose his physical capabilities to walk, run and write. The good news is that Keith will not lose his mental capabilities. His brain power will remain the same! He'll be the same kid you've always known. Will there ever be a cure? Someday...maybe 5 or 10 years. Something will definitely come along to help Keith. Our body is like a big and difficult jigsaw puzzle. The Human Genome Project is a huge research program which is putting together our genetic puzzle pieces to see how our body functions. Some of this research has already led to some promising discoveries for those people with Friedreich's Ataxia. Scientists already know that Chromosome 9 is where the Friedreich's Ataxia gene is located. But, it could be years before all the pieces are put together. But what are the doctors doing right now to help Keith? Keith is being monitored by 8 different medical professionals in the health care field. You may notice that he misses some classes for appointments. You may notice that Keith wears ankle weights and wrist weights. The doctors think that helps him with his balance. He has been prescribed exercises to keep his body strong and flexible. He takes 8 different vitamins every day. What are the teachers trying to do to help? Try to imagine what it would be like to tell your hands or legs to move a certain way and they wouldn't do it quickly or at all. Because of these problems for Keith, the school will allow Keith to use a computer or a tape recorder to complete assignments or tests. He will have a set of textbooks at home and at school so he won't have to carry such a heavy backpack. What can you, the students, do to help? Keith may need help in writing down assignments or notes in class. He may need to leave class early to avoid the crowds at lunch or at the afternoon bell. Remember, if he bumps into you, it's probably not on purpose. Most of all remember, he's the same Keith you've known all these years. I know many of you must have some additional questions. I'll try to answer them now... END of PREPARED TEXT NOTE: Here are my observations: You can expect a questions about life expectancy. We assured them that Keith would graduate from high school with them and go on to college. If pressed by another question re life expectancy, we only said that none of us know how long we're going to be around and keep the Q&A moving. It was asked if Keith would be in a wheelchair. The answer was yes, he'll own a wheelchair probably in late high school or in college. He might give you a ride. One girl had noticed Keith wearing the heart monitor and asked if that had been related to Friedreich's Ataxia. If your child wears a TLSO brace, that question may be asked. When asked further about inheritance, we were able to talk about getting one defective gene from each parent. Both parents were present so it was easy to use us as the example of carriers. We also stressed how much was being done in research today. If there are siblings you can expect the question about whether they will be afflicted. All the kids knew Keith had 2 other brothers and wanted to know if they would get Friedreich's Ataxia. We were able to say that Keith's little brother is a carrier like his parents and Keith's older brother did not get either copy of the Friedreich's Ataxia gene. His brothers got a simple blood test that would tell the doctors if they would get it. Props: This makes something so difficult to understand a little more real. Keith passed around his ankle weights and his MRI. Keith was not talkative but very involved with the passing around of his stuff. Students' emotions: Some girls cried as we talked about the possibility of a wheelchair in the future; some boys offered to help Keith around school. Most of all kids appreciate the simplified truth. Q&A allows you to answer questions in your own general way. Your child: Keith is now 14 and he would probably want to be absent or not around for this address. Each child is different in this respect. I would suggest asking your child if they want to participate or if they have any thing they would especially like you to put in your remarks. Bottom line: Presenting useful general information in a confident manner is key. If you appear comfortable, it helps students know that your child is the same student they have known over the years. That is a very tall order for a parent discussing such an emotional subject. Best of luck. THE INDIVIDUAL EDUCATION PLAN (IEP) FOR STUDENTS WITH FRIEDREICH’S ATAXIA OVERVIEW: According to the U.S. Education Department, there are five million students with disabilities in our country. A federal law intended to assist these students has been enacted called the Individuals with Disabilities Education Act (IDEA). Every child served by the Individuals with Disabilities Education Act (IDEA) is required to have an Individual Education Plan (IEP), which provides a blueprint for how the individual's education needs must be met. IEP teams usually consist of parents, administrators, the teacher and sometimes the student and outside experts. The IDEA says that each eligible child must have a plan that lists program goals and the kinds of services and supports the child will need to reach those goals. Under IDEA there are two different plans: (1) the Individualized Family Service Plan (IFSP) for infants and toddlers (birth to 3-years-of-age) and (2) the Individualized Education Program (IEP) for older children. This report focuses on the IEP. WHAT IS AN INDIVIDUALIZED EDUCATION PLAN (IEP)? When your child reaches the age of 3 (or age 5 in some states), the program plan that is written is called the IEP. This plan talks about the special education needs of your child, and how these needs will be met. As a family member, you will be an important part of the team that works together to plan the educational program for your child. Be ready to work with your child's team. Any time you feel the plan is not helping your child, ask for a review of the plan. If you disagree with the educational program planned for your child, you have a right to a hearing. With a good plan as a map, you, your child, and your school team can work together to make your dream come true. How long is this IEP in use? Does it get revised? Your child’s IEP team must meet at least annually to review and revise the IEP as needed. In addition, you or your school staff may request that the IEP team reconvene at any time to review and revise the IEP. What is my child’s role in the IEP process? Your child should be involved in developing his or her IEP as appropriate. Involving the student in the development of the IEP can lead to increased skill in advocating for himself or herself, in planning future learning, and in discussing strategies and supports provided and/or needed. It increases independence and self-esteem. IEP CONSIDERATIONS FOR A STUDENT WITH FRIEDREICH’S ATAXIA A student with Friedreich’s Ataxia will require modifications and adaptations to his or her school day, homework and school environment to accommodate his or her limitations and to be successful in the general education curriculum. A diagnosis of Friedreich's Ataxia with accompanying scoliosis and cardiomyopathy results in fine motor, gross motor and bilateral delays and limitations in endurance. Students with Friedreich’s Ataxia often need alternative means of written communication, which require instruction in keyboarding skills as an alternative to pencil and paper, and the availability of a desk-top word processor for classroom and homework. REFERRAL FOR EVALUATION As a parent, you may refer your child for an evaluation (occupational therapy, physical therapy, speech therapy, education, etc.) through your school district’s special education committee. Other professionals that work with your child can also refer him or her as needed. Outside reports or test results can be used but are not necessary. The evaluation must be completed within thirty days of signed parental consent. Your committee will hold a meeting, to which you are invited, to review the recommendations by the evaluator(s). You may invite others to this meeting, including friends, advocates, caseworkers, or specialists knowledgeable about your child. For a child with Friedreich’s Ataxia, it is helpful to have medical personnel involved. They can attend the meeting, be available by phone or send a written report to the committee prior to the meeting. It is helpful for the committee to be aware of the importance of certain therapies in maintaining the child’s current level of functioning. Speech and language evaluation: Dysarthria is a progressive condition affecting speech intelligibility. Physical therapy (PT) evaluation: Due to awkward gait, staggering, and incoordination, an evaluation is necessary. Difficulty with stops, starts and directional changes can be evidenced. Some school systems provide PT services for the development of therapeutic exercises for range of motion, strengthening, endurance and conditioning, neuromuscular re-education for balance, coordination, and posture. Occupational therapy (OT): Some school districts only offer OT that will improve the student's ability to perform in a classroom setting -- for example, keyboarding instruction. Some states allow more thorough OT (and PT) services several times per week. IMPLEMENTATION OF SERVICES Services should begin in a timely fashion, following the committee meeting. In most states, implementation of services must occur within 30 days of receipt of the committee’s recommendation by the Board of Education. You need to be a strong advocate for your child to assure the evaluation is completed and recommended services are begun in compliance with state regulations. You may have an independent evaluation conducted and can also request an impartial hearing if you disagree with the recommendations, if the evaluation has not taken place within the time allotted by state regulations, if the recommended services have not begun within the allotted time, or if they do not conduct annual reviews as required by the state. CURRICULUM/CLASSROOM ACCOMMODATIONS & OTHER MODIFICATIONS: Physical Education. The school’s physical education (PE) program will eventually need to be tailored to your child’s capabilities. A student may be mainstreamed initially in PE. However, this situation should be monitored closely as the student’s physical aptitude deteriorates. If the student has scoliosis associated with FA, it should be closely monitored by a medical professional due to its aggressiveness. A back brace may be prescribed for the scoliosis and is usually worn at least 18 hours per day. This back brace will limit the student’s range of motion and, consequently, PE activities. If possible, schedule mainstream PE class at the same time as the Special Ed PE class (middle and high school). This will provide flexibility for the PE teachers and your child to make decisions based on his or her ability to perform the daily physical activity. If gym uniforms are required, consider limiting the change of clothing to just a change of shirt. If the student has hypertrophic cardiomyopathy, a cardiologist be consulted regarding the safe level of physical activity. Seating. Consider requesting preferential seating near the door for easier classroom entrance and exit. Also, consider permission to leave class 2 minutes early to avoid the crowded rush. Lockers. Use a key lock rather than a combination lock. Combination locks are harder to manipulate. In a large school, request 2 lockers, conveniently located for the student’s activities at various times of the school day. Lockers should be located near the end of the row to avoid bumping by other students. Backpacks. Get permission to carry to each class (in some school systems, backpacks can normally be used only to transport books between school and residence). Changing classes. Request for the student’s schedule be arranged so as to reduce the distances between classrooms. Handrails must be used in school. The use of an elevator is the safer mode of transportation between floors for all students with FA and the only source of transportation for students using mobility devices. Make sure your school officials have prepared an emergency evacuation plan in case of fire or other emergency and that your child is aware of the safety procedure. Lunch. Consider having the student bring lunch from home if carrying a tray is difficult or have a lunch buddy to help carry the tray if the student buys lunch at school. Assignments. Most teachers will agree to shorten homework assignments to allow for physical limitations. Having the student do every other math problem, for example, can ensure that the student grasps the concepts without getting bogged down in the mechanics. The student can be given extended time to complete classroom assignments including tests. Teachers, teacher assistants, and parent volunteers can act as scribes for tests and other classroom assignments. Other students can be assigned to provide copies of their notes taken in class and to write homework assignments in the student’s assignment notebook. Testing. When the testing format does not permit a scribe and extra time for the FA student, individual or small-group testing should be considered. Transportation. If transportation by mainstream school bus is not manageable, consider requesting a special needs school bus provided through the county school system to transport the student from door to door. OTHER RECOMMENDATIONS: Peer Tutoring/Paired Working Arrangement (lab buddy) Extra assistance from teacher
(Team taught class is preferable) MATERIALS: TEACHER SUPPORTS: Parents of younger children may want to prepare a short presentation and appear with your child before his or her class to tell classmates about Friedreich’s Ataxia. The presentation should be brief and general. Show and tell items such as an MRI (picture of the brain), ankle weights used for balance or the results of the EKG on graph paper are of interest to the other students. REMINDER TO PARENTS: Schedule the IEP meeting to prepare for the transition to the next grade in the fall. If your child is entering a new school, request that the IEP team assigned at the new school be present for the spring IEP. The new team will have an opportunity to discuss your child’s needs with the current IEP team who is familiar with your child’s needs. PRIOR TO SCHOOL BEGINNING (FALL) Arrange a walk-through at your child’s school with key members of the IEP team. This facilitates any last minute changes in schedule, lockers, etc., to accommodate education concerns. In Summary: As a parent, be pro-active. Meet and know the names and phone numbers of every teacher, counselor and member of the IEP team. Give each a copy of the NAF publication “Students with Friedreich’s Ataxia”. When making copies of this publication, Xerox a copy of your child’s photo on the first page. In a larger school setting, this is extremely helpful to the teaching staff. The IEP is a working document. If you as a parent, have any concerns, contact a member of the IEP team. Make sure your child is a SELF-ADVOCATE-- Mom and Dad can’t be there every minute to make sure everything is running smoothly. Self advocacy will be one of the most important skills we teach our children. # # # ADDITONAL SUGGESTIONS submitted by Karen Kiernan: 1. Each school should have a special ed resource teacher who coordinates meetings and
deals with student's issues, iep's, annual reviews etc. He/She is a good person to get to
know and speak with on a regular basis. There are often new technologies available and
sources of information that they can help you with or suggest. by Karen Kiernan Information provided is meant to be used as a guide to tailor your child’s IEP. Forward any additional suggestions to: fapginfo@fortnet.org Emergency Plan for School by Sherri Foster fosterhome@sprint.ca INDIVIDUAL CARE PLAN FOR ( ) __________ has a progressive neurological disorder called Friedreich's Ataxia, which presently affects his balance, motor skills, muscle strength and makes him fatigue easily. He also has a tremor. As this condition gradually progresses, __________'s balance will get even worse, he could develop diabetes, scoliosis, and eventually would require a wheelchair. ___________'s eyesight, hearing and speech could also be affected and eventually he may probably have difficulty swallowing. __________ also has a progressive life threatening heart condition called Hypertrophic Cardiomyopathy, wherein the walls of his heart are thickening and causing his heart to have to work harder, making him fatigue easily and breathless. This condition will gradually progress making him even more fatigued and breathless, and there could be swelling, dizziness, chest pain and arrhythmia. Signs that might indicate an emergency situation include: 1. Change in behavior that indicates dizziness or disorientation If child shows some of the above symptoms and you are in doubt of whether or not to call an ambulance: Call Mother _________________, cell ________________ Emergency Action Plan: 1. Call 911 if ___________ faints or indicates chest pain 2. Call School First Aid Attendant, _______________ 3. Call Mother _____________ , cell ___________ Action Plan: 1. Classroom teacher to be aware of condition Limitations: __________ is not to be encouraged or pushed to over-exert himself and is to be allowed to take rests or to exclude himself from activities. |
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