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Ehlers-Danlos Syndrome User Group
accommidations @ school?
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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accommidations @ school?

what types of accommedations have any of you with EDS, hypermobility type found most helpful?
i'm 16, and in 10th grade:
i use the elevator because i can no long make stairs.
my arthritis in my hands makes work&notes very hard.
my kneck is in a constant strain, &i don't know how other students can stend looking down doing work. It hurts me terribly.
my legs have shooting lightning bolt feelings if they are not elevated.

i will soon be getting extra time on testing.

also, have any of you out there had any problems with peers that dont understand why you take the elevator, & pick on or show their doubt that anything is wrong?
have you any suggestions toward a solution?

not many know of my EDS, but i am doing a health class presentation on thursday as we are changing units to diseases. I thought that may help, then i can explain.

thoguhts? please?
Thank You.

-Katlyn Constance
4 Comments
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492869_tn?1285022533
You mentioned difficulty with your hands, and taking notes in class.  One accommodation that might be helpful is having a note taker.  That is, having the teacher assign another student in your classroom who happens to take good notes to give you a copy of them at the end of class.  Many teachers will have access to a nearby copy machine, so getting a copy shouldn't be too difficult.  A school nurse or school counselor should be able to help you discuss and/or setup this option with your teachers.
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1127960_tn?1264563492
Thank you very much. My Rheumatologist just recently sent out a note requesting i use a laptop for my notetaking, and an extra set of textbooks for home to prevent stress/dislocations/subluxations on joints while carrying books home. Hopefully this will be much easier on my fragile fingers. :) I'm doing midterms this week, so wish me luck. :) thank you for your help. :)
-Katlyn Constance
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Hi there,
Sorry the classroom setting is getting difficult.  I was a teacher before having to take some time off with Ehlers Danlos.

There are lots of accomodations that can be made for you in the classroom.  You can be given access to a computer, or have a student take notes for you.  There are different adaptions that can be made to your computer so you can speak into the computer and it converts the spoken words to written words (less strain on your wrists and hands)If your teacher's classes are done via Star Board/Power Point, she can print out the notes/presentations for you.  If you have problems with testing, extra testing time can be given but testing can also be given to you orally as opposed to written so that you do not have to strain your neck/wrists/fingers.

I would def. get an extra set of books.  Try elevating legs in the classroom.  As for the elevator and student's comments - find out if you are allowed to have buddies take the elevator with you.  If other student's are taking the elevator with you, other will be less likely to judge.

If the teacher/school is giving you a problem with any of this - request that the accomodations be put in an IEP.  It is a legally binding document.

Good luck.

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1517903_tn?1329307916
Hi.  I'm a teacher too.  Off right now from chiari surgery.

I agree with Halbashes.  If you're taking standardized tests (county/state), you need accommodations drawn up on an official document or you won't get anything.  I was wondering if a 504 plan could be drawn up, if it is available, since EDS is a primarily a physical disability.  It is more discreet as far as your records go because of HIPAA and usually managed through the guidance counselor.  

Some testing accommodations I can think of that might help could be (keep in mind some may not be available or there may be additional accommodations in your school district):
*Breaks during testing - so you can stand or do whatever exercises that your therapist suggests you do when you have to sit for an extended period of time.
*Someone to read the test to you / electronic reader.  The testing office might also approve an elevated device for your testing materials so that you do not have to look down.  It usually takes time to get something like that though, but it depends on the school system's procedures
*A scribe - Someone to mark the answers in your test booklet and write your answers so that you don't have to.  There are many reasons students don't do well and need this accommodations; pain is one of them.
*Small-group testing - However uncomfortable you may feel initially with testing outside of the classroom, testing in a small-group setting allows you to fully take care of yourself and your needs.  It also allows for the accommodator/test examiner to take care of your testing needs while you take your test.  This is nearly impossible to do for you if you are in the classroom.

Additional Instructional Accommodations you might be able to use could be:
Dictation software on your laptop - so that you can dictate your homework (essays, short answers, and other written responses)
Recording software on your laptop - to record teacher lectures during class.  Personally, I don't think this is as good as a good student taking good notes using the Cornell method or some other note-taking strategy, but to each their own.  It might be perfect for a particular class.  It's something to be discussed during the meeting.
Note-taker - see (right) above.
*I wonder if e-book options are available for your textbooks...

I am unfamiliar with your school system's procedures for accommodations, but you and your family must advocate for your scholastic success.  Do what you need to do to participate and fully enjoy your high school experience.  If you don't get the accommodations you need in the classroom, at home for homework, and during tests, your scores will not reflect what you know.  You also need to be comfortable with them by the time you reach college, if college is in your life plan.  Hopefully this helps.  

Good luck to you.
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