Five Frequently Asked Questions about EDS And School
by Peggy Rocha Snuggs
Peggy was an educator in Tampa, Florida who is now retired after 35 years of teaching. She's also the mother of a daughter with EDS. She is currently a volunteer on the Board of The EDS Network CARES and is the author of the booklet:
Meeting The Needs of the Ehlers-Danlos Child and Parent’s Guide
Helping Your Child Succeed at School
1. What should the school and teacher know about Ehlers Danlos Syndrome (EDS)?
The school administrators, guidance department, nursing staff and educators should know about EDS and how your child is affected by it before the beginning of the school year. Make sure this information is included in your child’s Cumulative Record. Do not assume that teachers will remember your child’s condition.
Teachers should be given a copy of the 504 Plan at the start of the year.
Teachers should know that the EDS child often feels isolated and different from their peers. They can help the EDS child feel accepted by frequent discussions with the child about his or her feelings, identifying and encouraging development of talents, and inclusion in activities that are not restricted.
Let the teachers know ahead of time how comfortable or uncomfortable your child feels about having EDS. Some students may be willing to discuss or report on EDS in class in front of their peers, yet some choose not to discuss their condition. In either situation, the child should be aware that the teacher has been informed of their EDS.
The educator, when guiding students to his/her choices of electives and activities, should know that certain activities might cause damage to joints or fragile skin and may put the child at risk for injury or failure.
Teachers should be made aware of wrist and hand problems and be informed of special equipment or accommodations your child will be using.
School personnel and teachers should be made aware of emergency procedures in case of cuts, dislocations or subluxations, as well as internal problems that may occur (especially in the vascular type). Such written instructions should be in the hands of the teacher, school nurse, and office personnel and should be readily available.
2. How Can We Deal With Chronic Absences?
Frequent absences are a real issue for students with EDS. Most schools have strict policies regarding attendance, and some schools offer incentive grade points or exam exemptions based on attendance. The child should not be penalized for EDS-related absences. It is important to meet with school administration before classes begins in order to discuss the possibility of excessive absences and how best to handle academics during these times. The child may need additional time or may even need adjusted assignments for these occurrences. The parent should ask about at-home instruction and the availability of home visits or online computer classes. Some schools post homework and class work assignments on a website for students who are absent. If this is not currently available, the parent should suggest that it be implemented.
Because of the emergencies that may occur, being close to your child’s school may be necessary. The parent may need to request “special assignment” to a school closer to their home or work.
3. What Do I Need To Know About Performance Testing?
Formal IQ and other performance tests can provide valuable information to the educator and the student. Motor difficulties due to hand-wrist hypermobility can adversely affect these written test results, so the parent should ask for careful interpretation. An occurrence of verbal-performance discrepancy could be due to motor problems instead of learning disability.
Parents should make educators aware of the potential difficulties, and students may need extra time or may require alternate methods of assessing performance. When necessary, ask to meet with the guidance department at the school to discuss testing accommodations.
4. What Should I Know About IEP's and 504 Plans?
You and your child have certain rights under the Section 504 of the Rehabilitation Act of 1973. All students who are considered exceptional under the Individuals with Disabilities Act (IDEA) are also considered disabled under section 504. However, all 504 disabled students are not considered exceptional under IDEA.
Generally, the children considered disabled under the IDEA will have goals and objectives written in an Individual Education Plan (IEP), and they may include accommodations. A 504 plan is NOT an IEP as it addresses the accommodations needed instead of long and short term goals. It is important to know that a 504 plan may call for the usage of certain assistive devices; however, they may not be paid for by the schools. The parents may need to purchase these devices with their own funds.
School districts may handle IEP and 504 Plans a little differently in regards to requests for services and referrals. The guidance department would be the best department to notify if you believe your child qualifies for a plan.
Ask your doctor to provide the school a letter of diagnosis and suggestions . The suggestions should be prioritized as to those that are always required and those that may be needed occasionally. When you meet with the school, it is helpful to remember that having rights and knowing those rights is important, but having a good working relationship with the school and the teachers is often more important. The ideal situation is one where parent, teacher and student are working together, not pulling apart. Become a positive problem solver, think outside the box, and look for new or unique approaches or compromises.
Things to Consider:
-Allowing storage of ice packs/gel packs at the school site
-Provide doctor’s note permitting non-prescription pain med use
-Requesting two sets of text books: one for home, one for school
-Asking for priority seating
-Requesting use of elevators
-Requesting use of book bag on wheels
-Allowing a note-taking helper
-Allowing extra time to get to and from class (leave before bell)
-Asking for a locker at eye level
-Asking to use a digital lock instead of combination lock
-Providing an ergonomic chair with arms for upper body support
-Using height adjustments on chairs/desks
-Providing a cushion for chair seat
-Allowing pencil grips
-Allowing a pad/cushion for sitting on the floor
-Using computers or Alpha Smart
5. What Should I Know About Elective Classes?
It is important that students with EDS try to lead as normal a life as possible. This includes socializing and playing with other children and participating in appropriate physical activity.
Because EDS is manifested differently for each person, students with EDS will have unique needs or restrictions concerning physical education and sports. When there is only mild hypermobility, physical education and sports may be allowed with an individually adapted program. When selecting appropriate physical activities, parents and students should discuss whether the activity could cause stress to joints or injury to fragile tissue. Generally, contact sports or activities that require vigorous exertion, heavy lifting, blows to the head or chest or excessive strain on joints and ligaments would not be the best choice. Sports such as swimming and golf may be a more logical alternative if done at an easy pace with opportunity for resting.
Alternatives to a PE Elective
No one likes to appear different, and students with EDS do not necessarily look different. This can create a problem when a student is enrolled in a sport because they are expected to perform in the same way as their unaffected peers.
Impaired mobility, weak hand control, or poor coordination can affect the success of a student with EDS. Being required to participate in a physical education elective could cause embarrassment and physical damage. Enrolling in a class and then being asked to sit out is unproductive for the student as well as the instructor. Ask what alternative classes are available if physical classes are not recommended. For example, your child could substitute a health related class for physical education credits. Ask how you can waive the credit altogether in favor of a more suitable elective.
Music is a good choice for EDS students. Be aware that certain musical instruments may cause stress to the joints, whereas others may be more acceptable. Each activity should be accessed based on an individual’s abilities and restrictions. The parents and student should make an appointment with the music teacher to discuss the instrument that would be most acceptable.