When Meghan and I started looking for ways to handle joint pain that can be caused by both EDS and POTS, our doctor suggested physical therapy. Our healthcare plan offered 6 covered visits and we found a therapist near us that also did some occupational therapy. I'm not sure that those 6 visits actually amounted to much - we were given some great exercises to do for strengthening areas around knees, ankles, elbows, and hips. The problem is getting a teen to actually do the exercises routinely and in a way that is not doing further damage. But we did learn about 504 Education Plans from our therapist. In all of our many, many doctor visits and discussions with doctors, PA's, nurses, and a few teachers, no one ever mentioned it to us.
Here is an excerpt from Kid's Health.org - The 504 Education Plan is part of the U.S. Rehabilitation Act of 1973 and is used for students who have physical or mental impairments that limit or somehow affect the ability to:
walk, breathe, eat, or sleep
communicate, see, hear, or speak
read, concentrate, think, or learn
stand, bend, lift, or work
Examples given by the Act include:
extended time on tests and assignments
reduced homework or classwork
verbal, visual, or technology aids
modified textbooks or audio-video materials
behavorial management support
adjusted class schedules or grading
excused lateness, absence, or missed classwork
pre-approved nurse's office visits and accompaniment to visits
occupational or physical therapy
I also did not know that a 504 Education Plan can also be used after a serious injury or illness - it covers a wide range of scenarios. And it is typically for the needs of students in regular classes and monitored by regular classroom teachers. It is separate from the Disabilities Education Act where students may need certain types of educational services or unique support staff for special disabilities.
Before Meghan started taking medication to help increase blood volume and heart rate, and before we started her IVIG, gym classes were taking a toll. Dizziness, nausea, and fatigue would take over the remainder of the day - even more so than on a non-gym day. We had a 504 plan written up by the school psychologist saying that we could do her gym at the local Y and keep a log that we turned in quarterly. Meghan needed exercises that were done with minimal position change - such as riding a recumbent bike, rowing machines, light weights, and some light swimming. And the school did not offer those kinds of alternatives.
This year Meghan is at the high school and there are two floors and lots of stairs. Under the 504 plan she could use the school elevator or have additional time between classes to get where she needs - drinking 6 propels a day brings a need for more bathroom breaks. But she refuses to do that. She doesn't want to have any special concessions or for anyone to think she has special needs. She carries a huge backpack around with her entire locker contents in it so that she can have time for the bathroom and skip the time it takes to get to her locker. The result has been back pain, shoulder pain, and energy wasted hauling this bag that must weigh 40 pounds up and down the stairs. As part of her plan, we are going to request 2 textbooks - one to be kept in each of her classrooms and one to keep at home. She will travel much lighter going forward.
It has been hard to get her to accept some help along the way. Or to realize she has to listen to her body and know when we need to make some changes or adjustments. Somehow society has made us feel like it is wrong or weak to need extra or "special" help. Some people look down on it or question it's validity. I think chronic illnesses - lyme's, lupus, POTS, Crohn's, migraines, and many others - all have this disbelief attached to them. Fortunately many big and important discoveries are currently taking place in how these illnesses are diagnosed and understood. The hope is that the awareness and acceptance will catch up.